(pronounced “ghee yan-bah rayâ€)

The Mayo Clinic describes this disease as an inflammatory disorder in which your body’s immune system attacks the nerves outside the brain and spinal cord (peripheral nerves) and, rarely, parts of the brain itself. Severe weakness and numbness in your legs and arms characterize GBS. Loss of feeling and movement (paralysis) may occur in your legs, arms, upper body and face.

Ken Eisenberger of Hidden Hill Counseling is a survivor of Guillain-Barré Syndrome, having made a complete recovery after having undergone full paralysis from the neck down and seven weeks of hospitalization and rehabilitation at Virginia Mason Medical Center in Seattle. Since his recovery, he has served as a regional contact for Guillain-Barré Syndrome Foundation International, devoting time as a volunteer disseminating information about this rare disorder; organizing, hosting, and speaking at conferences for healthcare professionals, patients, and their families; and providing information and emotional support to patients and their families during hospital and home visits and over the phone. If you or someone you know has been diagnosed with GBS, please feel free to suggest they contact Ken Eisenberger at 360-626-1457 for free information and emotional support.

Guillain-Barré Syndrome Information Links

Guillain-Barré Syndrome Foundation International

A central and main website devoted to information, research, and support for those afflicted with GBS (and variants of the disease) and their families. Also included is information in Spanish: Información acerca de SGB en Español.

Mayo Clinic Information on Diagnosis and Treatment of GBS

Comprehensive article providing an overview, signs and symptoms, causes, risk factors, diagnosis and treatment, self-care, and coping strategies.

Guillain-Barré Syndrome

Information article on many aspects of the disease (neurologychannel.com)

Books

A Dream Impossible by Brian S Langton (1412010640)

Author’s Description: After I had published my first book, A First Step – Understanding Guillain-Barré Syndrome, it occurred to me that the dream sequences described in that book would make for an interesting read on their own, as a collection of short – but impossible – stories. Thus were sewn the seeds for this publication. The ‘postscripts’ that have been added are included to assist readers who have not read the earlier book, and who therefore may not have a full understanding of the circumstances I found myself in. During my seven-month confinement in Intensive Care, on a ventilator for breathing assistance, diagnosed with severe acute chronic Guillain-Barré Syndrome – sometimes referred to in its abbreviated form as GBS, I experienced many dreams and hullucinations, some of which are described in the book. The medications I was taking, the inability to distinguish between night and day, being thrust into an unfamiliar environment, or something inherent in the disease itself may have been the cause. Although these dreams are not necessarily in the sequence in which I dreamed them, it is possible to connect them to certain events or phases of my illness. Initially, I was paralysed from my toes up to my eyebrows. This did not appear to inhibit my mobilty in some of the dreams though. One moment I was in a wheelchair, the next flying an F16 fighter jet, even though I had never flown before, other then as a fare paying passenger. I found these episodes much more intense than the garden-variety dream. In fact, most seemed so real that sometimes it was difficult, if not impossible, to separate them from reality. Every effort has been made to keep the original story lines. It must, of course be understood there were a few – although very few – grey areas, and only in those situations have I linked different parts of the story by the logical threads suggested by circumstances. For the most part, my recall of these dreams was total. Except for my relatives, the names used to identify characters are fictitious and used to enable the reader to follow the thread of the story. In these sequences, any similarity to any person, living or deceased, other than in the case of the exception noted, is entirely coincidental and unintended.

Against Giants by David Lim

Book Publicity: David recounts living a life changed after being paralysed and then discharged from a 6-month stay in a hospital. Grappling with his new disabilities, he plans a return to his former life of mountaineering, life of community contribution, as well as a new dream to inspire and give hope to others. The story is told with flashbacks covering a time-span of 10 years.

A First Step by Brian S Langton (1553694112)

Amazon Book Description: Book Description Part one of A First Step – Understanding Guillain-Barré Syndrome is a true, blow-by-blow account of the Author’s encounter, as a healthy Canadian businessman, with a rare and devastating disease, Guillain-Barré syndrome (GBS for short). It describes his seven-month long struggle for life in ‘Intensive Care’ after receiving a grim prognosis, and his subsequent dogged determination to overcome the effects of that disease. The second part is devoted to short stories based on dreams and hallucinations experienced whilst he was in ‘Intensive Care’, which in themselves reveal something of what a patient was going through. They also serve to illustrate the narrow boundary between reality and the dream world, and which whilst making for entertaining reading, could possibly be the subject of further study. Although the Author is a layperson, in medical terms, it is believed this book will be an important aid to medical professionals and care-givers, providing as it does, new insights and a unique perspective on the effects, not only of the disease, Guillain-Barré syndrome, but also of the handling and care of any long-term intensive care patient, and their subsequent rehabilitation. For the curious, it will answer many questions. For G.B.S. patients and their families it should provide inspirational reading. The foreword to the book has been written by Dr Frank Warshawski, MD, FRCPC, Director of Intensive Care, Rockyview General Hospital, Calgary. In addition to that prestigious involvement, the Author has been fortunate in receiving permission to use other material authored by exceptionally well qualified medical professionals, for which due credit is given in the ‘Acknowledgements’ section of the book, enabling him to produce not only an interesting publication, but an informative and educational one. In short, a ‘must read’ and deserving of a place on any medical bookshelf.

Bed Number Ten by Sue Baier and Mary Zimmeth Schomaker (0849342708)

Amazon Book Description: A patient’s personal view of long term care. Seen through the eyes of a patient totally paralyzed with Guillain-Barré syndrome, this moving book takes you through the psychological and physical pain of an eleven month hospital stay. BED NUMBER TEN reads like a compelling novel, but is entirely factual. You will meet:The ICU staff who learned to communicate with the paralyzed woman – and those who did not bother. The physicians whose visits left her baffled about her own case. The staff and physicians who spoke to her and others who did not recognize her presence. The nurse who tucked Sue tightly under the covers, unaware that she was soaking with perspiration. The nurse who took the time to feed her drop by drop, as she slowly learned how to swallow again. The physical therapist who could read her eyes and spurred her on to move again as if the battle were his own. In these pages, which reveal the caring, the heroism, and the insensitivity sometimes found in the health care fields, you may even meet people you know.

Learning to Walk Again by Anne K Brandt (0595258239)

Amazon Book Description: Guillain-Barré syndrome is strange combination of symptoms that includes paralysis in varying degrees. It strikes men and women, young and old. Often the primary care physician has difficulty diagnosing a GBS patient. After the symptoms have peaked and recovery has begun, patients expect to regain their old routines. However, many find their lives have changed in some way. A quest for information and a need to be connected with other GBS patients led Ann Brandt to walk a different path, away from community college teaching and toward writing and liaison work with other GBS patients. Patients need to feel connected with others. They are hungry for information about others experiences with the disease. Read how a sense of humor, faith in God, and a stubborn nature can work in recovery.

Mountain to Climb: The Quest for Everest and Beyond by David Lim (981041417X)

Book Publicity: On May, 1998, two members of the 1st Singapore Mt Everest expedition stood on top of the world. For expedition leader David Lim, it was the realization of a dream that had consumed him for more than ten years. But one week after the team’s triumphant return to a rapturous welcome, David contracted the devastating and rare nerve disorder Guillain-Barré syndrome. Hanging between life and death, he could barely breathe, speak, swallow or even move a muscle. Mountain to Climb is an absorbing first-person account of David’s preparation for the assault on Mt. Everest and his descent into the abyss of near-total paralysis. It is the story of a country’s quest for Everest, the failures, heart-break and sacrifices behind one of Singapore’s greatest sporting achievements. It is also an uplifting, inspiring and courageous story of a group of ordinary people with an extraordinary quest. You will agonize with the team as they come within 100 meters of the summit only to turn back, rejoice when they finally make it, and you will weep with David as he struggles in hospital. From climbing the world’s greatest mountain ranges to his slow journey to recovery and uncertain future, Mountain to Climb is a story that will hold you in its grip like no other.

No Laughing Matter by Joseph Heller and Speed Vogel (1556114249)

From Publishers Weekly: In alternating chapters, Heller and Vogel recount Heller’s bout with Guillain-Barré syndrome, a paralyzing affliction that struck him in 1981, from which he has now recovered. [He has subsequently passed away.] The two voices blend magnificently. The authors have been friends for 25 years and together they engagingly draw readers into Heller’s hospital room and into both their lives. The physical and emotional ramifications of Heller’s condition, for himself and his circle of friends (Mario Puzo, Dustin Hoffman, Mel Brooks), are honestly detailed; and Heller, in his first nonfiction work, movingly and unsentimentally describes the experiences of paralysis, illness and rehabilitation. Stories of disease are unlikely to be as lively and fun as thisthere is even a love interest as Heller falls in love with his nurseand for anyone interested in Heller and his work, the book is a treasure trove of biographical information. Repetition slows the bookthe derivation of the name Kinky Friedman (he makes a cameo appearance in Good as Gold is offered several times; Joseph Stein is more than once identified as the author of Fiddler on the Roofand the authors seem to name-drop when they describe the social scene at Mt. Sinai, but as one friend of Heller’s remarked to Vogel after a visit to the hospital: “It was not like visiting any other patient. It was sheer entertainment.†First serial to the New York Times Magazine. Copyright 1986 Reed Business Information, Inc.

No Time for Tears by Dorris R Wilcox (1929175078)

Amazon Book Description: Combining aggressive self-education, massive doses of positive thinking, a barrage of nutritional supplements and unshakable faith in God’s healing power, Dorris Wilcox achieved against the odds 95% recovery from Guillain-Barré syndrome, a potentially lethal neurological disorder. She gives sufferers from all debilitating afflictions the tools to acquire and maintain the positive mindset they need to triumph over their own adversity. Also included is an extremely helpful, comprehensive appendix of sources for additional information on Guillain-Barré syndrome.

Nothing But Time by Judy L Ayylidiz (0738852600)

Amazon Book Description: Overnight, everything in her life alters when Judy awakens paralyzed from the waist down by a mysterious illness. As she struggles for the courage to find a way of escape from this well of isolation, pain and powerlessness, her creative imagination takes flight. Armed with insight gleaned from her own stories about events and people in her past and present — told with restrained humor and often with Appalachian flavor — Judy discovers that her spiritual desire to “walk†is stronger than the fear of falling.

Numb Toes and Aching Soles: Coping with Peripheral Neuropathy by John A Senneff (0967110718)

Amazon Book Description: A comprehensive guide for the millions who have painful and disabling peripheral neuropathy. Covered are causes, symptoms, tests and treatments – both conventional and alternative – and ways of coping day to day. The book is written from a patient’s point of view with over 200 patient comments on treatments. There are also special sections for those with diabetic or HIV-related neuropathies (up to half in these groups are affected), as well as reports on experimental drugs in the pipeline. Inputs from 12 leading neurologists have been incorporated.

Numb Toes and Other Woes: More on Peripheral Neuropathy by John A Senneff (0967110734)

Nutrients for Neuropathy (The Numb Toes Series, Vol 3) by John A Senneff, Laurence J Kinsella (0967110750)

The Official Patient’s Sourcebook on Guillain-Barré Syndrome by Ikon Health Publications (059783069X)

Amazon Book Description: This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to guillain-barrè syndrome (also Acute idiopathic polyneuritis; Acute immune mediated polyneuritis ; Acute Immune-Mediation Polyneuritis; Acute inflammatory demyelinating polyradiculopathy; Acute inflammatory neuropathy; Acute polyneuropathy), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on guillain-barrè syndrome. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms.

Solomon’s Porch by Jane Riley (158851207X)

Amazon Book Description: Guillain-Barré syndrome is more than a disease: it is a disaster. SOLOMON’S PORCH, THE STORY OF BEN AND ROSE, is the intimate fictional account of one family’s struggle with an ailment that left Ben Windham paralyzed and his relationships with people changed.