While I don't have epilepsy, I have been interested in learning and passing on reliable and accurate information about epilepsy for a long time.
My interest began when I was 12-13 years old and I'm not quite sure why then; however, as I've grown older I've met more and more people who deal with seizures as part of life.
A book that has had a profound impact on me is Rusty's Story by Carol Gino (Bantam, 1986; Revised ed., ah-haa! books, 1997). This is a book about a woman who has epilepsy and was misdiagnosed as schizophrenic. As a result she was horribly mistreated and improperly medicated for years. As far as I am concerned, this is a "must read" for anyone interested in learning about how people with epilepsy have been misunderstood.
I wanted to come up with a bibliographic page, but I'm probably not the most qualified to evaluate the books. So I've come up with a set of links, and a short bibliography of what I have read, and my unqualified summary of the books.
This organization is a network of healthcare providers specializing in epilepsy, located in Northwestern Ohio.
The Epilepsy Institute
This site provides links for social and vocational support as well as treatment. The Epilepsy Institute is a network of healthcare providers specializing in epilepsy, located in New York City and southern Westchester County, New York.
Aimed at teenagers, this website is sponsored by the Epilepsy Foundation of America and provides chat and bulletin board forums for sharing experiences.
British Epilepsy Organization
The United Kingdom's version of the Epilepsy Foundation of America.
Deutsches Epilepsiemuseum Kork
(The German Epilepsy Museum, Kork)
This is a unique museum with information for laypeople and professionals alike. Bravo to the founders!
This is the Canadian version of the Epilepsy Foundation of America.
Epilepsy.com
A website dedicated to epilepsy, including links to various organizations, hospitals, and other support networks.
Epilepsy Education Association
This organization is still small, but is dedicated to publishing accessible information for all readers interested in epilepsy.
The Epilepsy Foundation of America
This is a wonderful organization here in the United States.
EFA has chapters all over the U.S. and all of these affiliates offer support groups and some printed information. If you can't get it locally, EFA's web page provides lots of information from scholarly books to wallet cards.
This organization is also based in the United Kingdom.
This section contains links to pages by people who have epilepsy, or people who are personally affected by the disease in those around them. These links are the "most fragile" of all, so they are subject to rapid change, addition, or deletion.
Epilepsy Webring
Much of this information is in accordance with the cataloguing records at Cleveland Public Library's website, or that of the Cuyahoga County Public Library.
Wherever possible I have included my personal notes on the book. Those items which I think are exceptional in quality or quantity of information I have noted with a (***) before the entry.
Aird, Robert B. The management of epilepsy. Springfield, Ill.: Thomas, 1974.
Alvarez, Walter C. Nerves in collision. New York: Pyramid House, 1972. This book is not the easiest to read. It is somewhat "dry" and clinical. There is a lot of discussion of neurology that is probably inaccessible to the average reader.
*** American College of Physicians home medical guide to epilepsy. New York: Dorling Kindersley Pub., 2000. An easy read for anyone who is trying to learn the basics about epilepsy, this book includes diagrams and resource information.
*** Brainstorms -- epilepsy in our words: personal accounts of living with seizures. New York: Raven Press, 1993. Excellent work which consists entirely of writings by and interviews of people with epilepsy. I highly recommend it.
*** The brainstorms companion: epilepsy... More information to come when I can look this one up again. It is good, I assure you!
The brainstorms healer: epilepsy in our experience: stories of health care professionals as care providers and patients. Philadelphia, PA: Lippincott-Raven, 1998. I'm still waiting for this book to arrive at one of the local libraries. It has been on back-order for three years. I'm sure it will be quite good, considering what I have learned from other "Brainstorms" series books.
*** Browne, Thomas R., and Gregory L. Holmes. Handbook of epilepsy. Philadelphia: Lippincott-Raven, 1997. This publication is aimed at nurses, but it provides a relatively easy read summarizing seizure characteristics and treatments. Family members who have a basic understanding of medical terminology will find this book useful.
Burden, George. Understanding epilepsy. Brooklyn Heights, N.Y.: Beekman Publishers, Inc., 1980.
Calvin, William H. Conversations with Neil's brain: the neural nature of thought and language. Reading, Mass.: Addison-Wesley, 1994. A chronicle of the open-skull mapping of patient Neil's brain and epilepsy focus, this book may be difficult for readers who do not have prior knowledge about the scientific aspects of epilepsy.
Chilton, Leanne. Seizure free: from epilepsy to brain surgery, I survived, and you can, too! Dallas, TX: English Press Publications, 2000.
*** Epilepsy A to Z : a glossary of epilepsy terminology. New York: Demos, 1995. A MUST READ! You will find everything from definitions of the types of seizures to information about specific anti-epileptic drugs. I consider this an excellent resource.
Fletcher, Sally. The challenge of epilepsy. Santa Rosa, CA: Aura Pub. Co., 1985.
Fletcher, Sally. The challenge of epilepsy. Santa Rosa, CA: Aura Pub. Co., 1986. Reissue of 1985 publication.
Freeman, John Mark. Seizures and epilepsy in childhood: a guide for parents. Baltimore: John Hopkins University Press, 1990.
Freeman, John Mark. Seizures and epilepsy in childhood: a guide for parents. Baltimore: Johns Hopkins University Press, 1997. Updated edition of 1990 publication.
*** Gino, Carol. Rusty's story. New York: Bantam Books, 1986. This is "the book that started it all" for me. It is very intense and very disturbing, but well worth the read if you really want to know what it's like to live and try to help someone who has a barely controllable case of epilepsy.
*** Gino, Carol. Rusty's story. Revised ed. Garden City, N.Y.: ah-haa! books, 1997. An updated and slightly expanded edition of the 1985 publication. This edition includes a short update on Rusty's life.
Guberman, Alan. Essentials of clinical epilepsy. Boston: Butterworth-Heinemann, 1999. This is a scientific publication aimed at readers in the medical field. There is information about and diagrams of various electroencephalograms (EEGs), medications, and the clinical management of various epilepsies. To understand and learn from this book you must already have a basic to intermediate knowledge of epilepsy.
Gumnit, Robert J. The epilepsy handbook: the practical management of seizures. New York: Raven Press, 1983.
Gumnit, Robert J. Living well with epilepsy. New York, N.Y.: Demos Publications, 1990.
*** Hermes, Patricia. What if they knew? New York: Harcourt Brace Jovanovich, 1980. This is a children's book. It tells the story of a girl who has epilepsy, who moves to a new school and tries to hide her seizures. I this this is a very good book not just for its portrayal of what seizures feel like to the person with epilepsy, but because of the moral lessons.
*** Hopkins, Anthony. Epilepsy : the facts. New York: Oxford University Press, 1981. A thick book, but well worth the read for someone who is trying to learn basic information about epilepsy.
*** Issues and answers: a guide for parents of teens and young adults with epilepsy. Landover, MD.: Epilepsy Foundation of America, 1991. Very good publication from the Epilepsy Foundation of America which can be easily read by parents, teens, and young adults alike. This is not a short pamphlet; it includes several different chapters about different types of seizures, medical, academic, social, emotional and physical effects of epilepsy and anti-epileptic drugs. I highly recommend it.
Just like you and me. [videorecording] Alexandria, Va.: PBS Video, 1990.
Laidlaw, Mary V. Epilepsy explained. New York: Churchill Livingstone, 1980.
Lechtenberg, Richard. Epilepsy and the family.
Lechtenberg, Richard. Epilepsy and the family: a new guide. Cambridge: Harvard University Press, 1999. Updated edition of the original publication.
McGowen, Tom. Epilepsy. New York: F. Watts, 1989.
Middleton, Allen H. Epilepsy. Boston: Little, Brown, 1981.
*** The Parke-Davis manual on epilepsy: useful tips that help you get the best out of life. New York: KSF Group, 1993. With some emphasis on medication, this is another good encyclopedia-format book.
Philbrick, W. R. (W. Rodman). The last book in the universe. New York: Blue Sky Press, 2000. This is a science fiction/fantasy book. It is probably best suited to young adults. The main character has epilepsy. If anything, the book gives encouragement to the reader who has epilepsy because the main character shows courage and makes valiant efforts to help others -- and succeeds.
A Practical approach to epilepsy. New York: Pergamon Press, 1991.
Richard, Adrienne. Epilepsy: a new approach. New York: Prentice Hall, 1990. This book describes the alternative treatments sought and tried by the author.
*** Robb, Preston. Epilepsy: a manual for health workers. Bethesda, Md.: U.S. Dept. of Health and Human Services, Public Health Service, National Institutes of Health, National Institute of Neurological and Communicative Disorders and Stroke; Washington, D.C.: For sale by the Supt. of Docs., U.S. G.P.O., 1981. While this is aimed at people working in a healthcare setting, it provides useful information for the adult reader who wants to know about the special needs of and attention to people with epilepsy when they are in the hospital.
Sander, J. W. Epilepsy : questions and answers. Coral Springs, Florida: Merit Pub. International, 1999.
Sands, Harry. The epilepsy fact book. Philadelphia: F. A. Davis Co., 1977. Concise information information about epilepsy.
Sands, Harry. The epilepsy fact book. New York: Scribner, 1979. Updated edition of 1977 publication.
*** Schachter, Steven C. The brainstorms family: epilepsy on our terms: stories by children with seizures and their parents. Philadelphia: Lippincott-Raven, 1996. Continuation of the "Brainstorms" series. Very easy to read, very helpful for those who want to know what epilepsy means to the patient.
*** Silverstein, Alvin. Epilepsy. Philadelphia: Lippincott, 1975. Good starting information for families. Aimed at an adult or mature teenage reader.
Slater, Lauren. Lying: a metaphorical memoir. New York: Random House, 2000. This is a stream-of-consciousness work. It's not the easiest read, but some people may find it useful to see the creative side of a person who may or may not have epilepsy (by her own words.)
*** Stage fright. [videorecording] Los Angeles: Direct Cinema, 1987. This is one of my favorite videos about epilepsy because there is an actual portrayal of a seizure. It doesn't leave you guessing about what the effects of epilepsy "look like." The movie is probably aimed at pre-adolescent and adolescent children.
Sullivan, Margaret Walker. Living with epilepsy. New York: Nellen Pub. Co., 1979.
Sullivan, Margaret Walker. Living with epilepsy. Modesto, CA: Bubba Press, 1981. Updated edition of 1979 publication.
*** Temkin, Owsei. The falling sickness; a history of epilepsy from the Greeks to the beginnings of modern neurology. Baltimore: The Johns Hopkins Press, 1945.
Vander Hook, Sue. Epilepsy. "Understanding Illness." Mankato, MN: Smart Apple Media, 2001. This book is aimed at children and includes large color photographs of various medical instruments and procedures.
Weaver, Donald. Epilepsy and Seizures: Everything You Need to Know. "Your Personal Health Series." Buffalo, NY: Firefly Books, 2001. A relatively easy read with introductory information on seizures. The author's text is augmented by "real life story" shorts from the lives of patients.
*** Westcott, Patsy. Living With Epilepsy. Austin, TX: Steck-Vaughn Company, 1999. This children's book is written in a clear and concise manner that can be appreciated by adults as well. It includes large color photographs demonstrating what seizures might look like, as well as basic information about what it is like to live with epilepsy. There is a glosssary and an additional reading list at the end of the book.
*** Wilner, Andrew N. Epilepsy: 199 answers: a doctor responds to his patients' questions. New York: Demos Vermande, 1996. Another book which has lots of good information in an encyclopedic format. I highly recommend it.
Additional reading related to brain injury/neurology:
Selenick, Richard C., and Cathy E. Ryan. Living With Brain Injury: A Guide for Families. Birmingham, AL: HealthSouth Press, 1998. This book gives an excellent and easily readable introduction to what can be expected after a person has a traumatic brain injury. While it focuses strongly on rehabilitation of moderate-to-severe brain injuries, there is ample information about milder injuries as well.