SEIZE HOPE:
Just a Brain Storm on an otherwise Sunny day
by Mary Ady Fontaine
Forward by R. Nicolle Matthews, PhD
Smashwords Edition
Version 10/2011
Copyright 2011 Mary Ady Fontaine
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Cover Design & Author Headshot by Jennifer White http://www.jenniferhelenephoto.com
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*100+ internet links & references inside*
Join the Books Official FB page: http://www.facebook.com/EpilepsyAwareness
Epilepsy Blog: http://epilepsyu.com/maryadyfontaine/
“Heroes Among Us,” page: http://giving.epilepsyfoundation.org/site/TR/Events/Tributes?pxfid=21910&fr_id=1060&pg=fund
*If you do anything to raise Epilepsy Awareness: send me an email with a photo and summary, and I will post it to my Official FB page: mary.fontaine0422@gmail.com
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Other books written by Mary Ady-Fontaine:
“An Infant Massage Guidebook for Well, Premature & Special Needs Babies,” by Mary Ady
Link to purchase "Infant Massage" book by Mary Ady Ranked 4/1,000+ books in it’s category since 2008.
Both books are internet linked & referenced.
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REVIEWS
"This is an uplifting read about improving the quality of life for people with epilepsy and their caretakers/family by simply choosing hope over 'the downward spiral to despair,' after diagnosis. I have never seen so many stories of hope, or uplifting words in a book written for someone post diagnosis with Epilepsy. It is completely internet linked and referenced. I am proud to say we have similar goals at the Epilepsy Association of Central Florida & Epilepsy U.”- Chuck Carmen.
Chuck Carmen has been the Executive Director of the Epilepsy Association of Central Florida (EACF) since 1994. Mr. Carmen has been selected by Southeast Association Magazine as one of the four most influential Executives in the Southeast. Chuck is only the second Executive Director in EACF’s long history, and, is the longest serving Epilepsy Executive Director in Florida.
In addition to managing the day-to-day operations of EACF, his experience and knowledge has certified him as an “expert witness” where he has testified in numerous high profile cases. Personally he has conducted hundreds of presentations, seminars, and training programs on all aspects of Epilepsy, as well as becoming one of the nation’s leaders in the education and prevention of Shaken Baby Impact Syndrome.
http://epilepsyassociation.com/ Epilepsy Association of Central Florida (EACF)
http://epilepsyu.com/ Epilepsy U
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TABLE OF CONTENTS
Foreword by R. Nicolle Matthews, PhD
Chapter 1: Epilepsy: Cultural beliefs defining Humanity around the World.
Chapter 2: Epilepsy Humanitarian Heroes changing the stigma surrounding Epilepsy.
Chapter 3: Understanding how the body communicates through Neurons correctly; No seizure
Chapter 4: The miscommunication of Neurons; The seizure, the brain/body seized.
Chapter 5: Choosing Hope over Despair after Diagnosis: What happens next?
Chapter 6: Know your Seizure Threshold: Creating a Lifestyle of Prevention
Chapter 7: Women, living life to its fullest with Epilepsy.
Chapter 8: Driving & General Safety: What to consider.
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DEDICATION
Extraordinary people survive under the most terrible circumstances and they become more extraordinary because of it. - Robertson Davies
I would like to dedicate this book to the people in my life who have been there for me through both the struggles and triumphs in my life relating to Epilepsy and life itself. It’s easy to be there during the triumphs but you learn who loves you by who stands by you supportive and tolerant through your struggles and trials of life.
My parents have always been there for me. When I had my very first seizure as a teenager, when I awoke my Father was there. Most of the times I believe both my parents were there when I awoke. It was very comforting to know that they’d always be there when I awoke. When I checked into Johns Hopkins University Epilepsy Monitoring Unit as an adult and needed emotional support, my Mother & daughter both slept there with me most of the nights to keep me company.
My brother Earle and my sister Alison always have had something to uplift me and make me laugh when I give them the worst news.
I will always remember the moment I shared some medical news with my brother and was feeling very defined by it and depressed that by a word my view of myself had changed in an instant, and his response was, “Don’t worry about those doctor machines,” and it made me laugh and gave me the perspective that I wasn’t labeled by the diagnosis, I have always been me and always will be.
Or many of the times I was living with and/or visiting my sister and have major confusion or a medical issue, she would always curl up in what I remember to always have been the most comfortable place on the planet and I knew everything would be okay because she was there. I find and have always found the greatest solace in my family in the moments of despair. I find equal joy with them during my triumphs, because without them I wouldn’t be where I am today.
The truth is, I would be most likely be living at a shelter or hospital and receiving medical care through the government, isolated and alone with my daughter (and at times probably have had her put in care other than mine) were it not for my family helping me through the maze and myriad of diagnoses, treatments, side-effects, doctors, insurance issues, cost of insurance, housing and food when I was unable to work from Epilepsy.
It has occurred to me how fortunate I am to have the support of my family. I often am amazed at how easy it actually would be to become homeless, as a person with Epilepsy with no support system. For God’s grace, there go I.
To everyone who has shared and expressed their true self with me and always been kind, tolerant and loving whether for a moment or years of my life, I love you and appreciate all the joy you add to my life, especially to Emily Cuison & Laura Tomlinson my life-long “Power Friends.”
Finally, I would like to dedicate this book to the most important people in my life, my family: my husband & my daughter. Russ Fontaine who is the most honorable, handsome and loving man I have ever had the pleasure meeting. I am filled with immense gratitude for the unconditional love and support that is always there for me in my home. I am grateful for the peace that my husband’s presence brings into our home, like living with Buddha. He has harnessed his inner chi so well; he shares it with all he knows with no effort, and is either the most humble man I know or truly has no idea how much he affects all those in his life, my thoughts are both. And to my darling daughter Chloe, who got the “when she walks in a room it brightens up with the love she exudes gene,” or maybe it’s from the love I have for her.
Thank you to all of the Doctors who truly treat Epilepsy with compassion, case by case instead of by condition solely & Researchers who spend time searching for a cure, and to my readers, may you find HOPE and COURAGE to SPEAK OUT in the words I have written. God love, I do. MF
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FOREWORD
by R. Nicolle Matthews, PhD.
I did not know Mary when she was originally diagnosed with Epilepsy but I’ve been a friend to her and her sister for over 10 years. There were many times when her sister, Alison, (whom I was friends with first) would tell me about a hardship her little sister was going through. It might have been a lost job, a difficult time with a boyfriend or knowledge that she had left college. She described Mary without judgment or opinion – we were just two friends relaying facts about our families. Eventually, Mary came down to visit Alison and I was able to meet her. The three of us shared multiple slumber parties, swapping stories until the sun started spilling over Hill Country and in through the windows.
I remember thinking her bubbly and free spirited personality did not match up to the disheartening stories I had heard about her over the previous year. The girl sitting in the living room with me had goals and aspirations as high as mine.
Only recently did I find out Mary has been having seizures for years; that they were the reason behind many of the stories I had been told all those years ago. Seeing as how I work with individuals with the same diagnosis in my current clinical work, the pieces finally started to make sense. Without a full understanding of the diagnosis and a war chest to battle its effects, a person can easily get overwhelmed and feel beaten (and sometimes ashamed due to the side effects). The person can start to feel as though they are ‘an Epileptic’ versus a writer/athlete/mother/student who also has Epilepsy.
How a person perceives their disease makes a grand difference in how, and if, they are able to lead a successful life in spite of it.
Thankfully, Mary’s Epilepsy war chest includes two very important weapons – her family and her words. Mary is lucky; she has an intact and healthy family who were strong enough to help her when life proved to be just a little too much for her. They could scoop her up when depressed or help her find answers when tired of looking on her own. Not everyone has this set of tools and Mary is aware of how lucky she is to have the people surrounding her that she does. Everyone, however, has access to the second weapon – words. Education. A voice. As Mary speaks of throughout this book, she (and you) can speak out, educate yourself and others, and advocate for the disease to ensure others know what to do if they see someone having a seizure.
I recommend you read this book if you have recently been diagnosed or have been living in silence with the diagnosis. The history and treatment of those with the disorder is outlined as are methods to educate others on first aid responding. This book is a tribute to both of Mary’s tools - A thank you to her family and an education for a seeking mind. I hope you enjoy it as much as she enjoyed being able to SPEAK OUT.
- R. Nicolle Matthews, PhD.
Dr. Matthews received her Doctorate in Psychology with a concentration in Behavioral Neuroscience from the University of Texas in Austin, Texas. Her prior experience includes work as a professor and guest lecturer for Texas Lutheran University and The University of Texas on topics such as The Application of Conditioning Procedures; Animal Learning and Behavior; and The Application of Schedules of Reinforcement. Dr. Matthews has served as a JRC clinician since February, 2006.
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ABOUT THE AUTHOR
Mary Fontaine is a native Californian, transient Texan, raised alongside her sister Alison and brother Earle by her parents Howard & Susan (Woltman) Ady of California in historic Mount Vernon, Virginia. Mrs. Fontaine currently resides along the Emerald Coast of Florida with her husband Russ and their wonderful family to include a daughter, Chloe and two wonderful kittens adopted from the local shelter- Luna Belle “Beautiful Moon,” & Orion “Gentle Hunter.”
Mrs. Fontaine has a personal passion for following current research and journals on Neurology worldwide, as she was diagnosed with Juvenile Myoclonic Epilepsy after developing Epilepsy at 6 months, and at age 15 after a Grand Mal seizure she developed other Seizure Disorder types, and has a beautiful daughter diagnosed at 4 years of age.
Mrs. Fontaine and her daughter both support & are active participants with research on Epilepsy and have donated their time, blood, MRIs & EEGs with no reimbursement through John Hopkins University to the NINDS Coriell Institute on Medical Research in their Human Genetics Repository (HGR.)
HGR is a genetic resource center for human gene discovery for neurological disorders. The purpose of the HGR is to develop genetic resources that can be shared by the research community, and to encourage the research efforts of established scientists, junior investigators, and scientists with novel approaches.
Mrs. Fontaine has attended Northern Virginia Community College in Virginia, Hardin-Simmons University in Abilene, Texas, and George Mason University in Fairfax, VA with a focus on Psychology in Virginia.
Mrs. Fontaine is a graduate of the nationally acclaimed Potomac Massage Training Institute in Washington D.C. Mrs. Fontaine has served as a Faculty Member for Heritage Institute’s Associate Degree program in Massage Therapy, teaching Human Anatomy, Physiology, Kinesiology, and Practical Massage Therapy.
Mrs. Fontaine is a well-known Epilepsy Advocate who is able to relate to people after diagnosis and get to the heart of the issue of Acceptance or Denial by Parents and by those Diagnosed. She has both experienced life hiding Epilepsy and its consequences, and learned how to life free by Accepting the Diagnosis, learning Self-confidence that Epilepsy would not define her and that she would just talk about it; she would stop missing her prescription from not wanting to “come out of the closet” due to fear of being labeled of judged. Speaking out now, Mrs. Fontaine speaks out about Epilepsy and living her life, living to the fullest without feeling defined, or in fear of the word Epilepsy defining her, or putting limits on her life in hopes that those diagnosed will make the same choice: SPEAK OUT and SEIZE HOPE.
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CHAPTER ONE
Epilepsy: Cultural beliefs defining Humanity around the World.
Three million Americans are living with Epilepsy also referred to, interchangeably, as a Seizure Disorder. I am living with a Seizure Disorder. And I am living life, with Educated Awareness & Hope, to its fullest along with millions of others. And so can you. It is a choice. One you can make TODAY.
This chapter will explain in plain terms how the treatment of people born in the United States, has a whopping 70% control with prescriptions alone versus 2/3rds of the population that has Epilepsy, living in third world countries due to lack of education, and prevention in many cases are viewed and thus treated in countries around the world. To realize how fortunate we are for the current options we have in treatments for Epilepsy and also how important it is to Speak Out about Epilepsy and raise money for research to find a cure, and sponsor doctor’s humanitarian efforts in third world countries.
With THREE MILLION people walking around in the United States, ask yourself how many people do you know who have told you they have Epilepsy? It can easily be a “hidden” disorder, as it only affects a person temporarily and can be controlled by medicine in close to 70% of those who have Epilepsy.
I know, I am one of those three million people, and even though I was diagnosed at 15 I still can count the number of times I have told someone, “I have Epilepsy,” on one hand, until now. Previously, I would say nothing or something along the lines of, “I have about 500 seizure activity spikes in my brain, so I take a prescription so I don’t have a ‘real’ (tonic-clonic/grand mal) seizure. And, it’s really no big deal.” Assuming people would treat me differently, be afraid of me having a ‘real’ seizure, or it impacting their life. I was living in both denial and fear, and doing nothing to change the Stigma for those living with Epilepsy, and worse: I was enabling it.
Until, NOW. Those are my power words. Because NOW, I know that speaking out and educating people about Epilepsy Awareness and Seizure First Aid. I am taking a step in Advocacy in hopes to eliminate the embarrassment, the stigma and give hope to people who are diagnosed in this generation and those to read this to follow in my footsteps.
Why should EVERYONE who has Epilepsy or loves someone with Epilepsy SPEAK OUT? Epilepsy is one of the most common neurological disorders, and even just educating proper seizure first aid could save a life, or the common answer to first-aid is often the incorrect shown in movies, to put something in the mouth, could harm the person instead of saving a life. Asking question you may have and having them answered by people with Epilepsy will change how you view it, forever.
SPEAK OUT so more people realize the diagnosis of Epilepsy does not define you, you can still go on to fulfill all of your dreams. Speak out to raise awareness & funds for research when people realize how many people have Epilepsy in their lives for those in our lives, as well as the less fortunate living in third world countries.
SPEAK OUT to educate people overseas in third world countries, where nearly two-thirds of new cases are discovered, or FIFTY million people with Epilepsy live, according to the World Health Organization who are in desperate need of Education, Prevention (in many cases) & Treatment.
Speak out for LIFE. Speak out of LOVE. Speak out for the FUTURE. Speak out for HOPE.
Ten percent (1 in 10) of Americans will have a seizure during their lifetime; 200,000 new cases each year; 3 percent of Americans will be diagnosed with Epilepsy by the time they reach 75; one person every FOUR minutes will hear, “You have Epilepsy.”
In developing third world countries there are several barriers to adequate treatment for people with Epilepsy. In third world countries the diagnosis is often seen, diagnosed and treated directly correlating to local ethnic, racial, religious, economic, educational, and cultural diversities, which vary significantly throughout the world. Underdeveloped countries are unable to receive the basic education and knowledge of Epilepsy as a non-communicable (not contagious,) very common neurological disorder, that is preventable in some instances as well as treatable in most cases.
This lack of knowledge has led to several theories upon why a person has a seizure and what it means to the community, which has resulted in several different (usually extreme) ways communities treatment people with Epilepsy both physically and socially in third world countries.
South-east Asia in Laos: The Hmong view of Epilepsy:
The Hmong live in the mountainous region of Laos, which covers about 70% of their land. Laos is in the center of SE Asia, surrounded by surrounded by countries more often mentioned: Burma, China, Cambodia, Thailand and Vietnam. The Hmong of Laos believe a person who suffers from seizures is considered to be an anointed (blessed by God) one in their society.
This gives someone with Epilepsy an instant elevated social status, and usually they become a shaman (spiritual healer) later in life as their society believes having seizures gives them innate or intuitive sympathy for the suffering of others and lends them emotional credibility as healers1.
African Views of Epilepsy by country: In Africa, it is especially dangerous to be seen as having Epilepsy, as it is considered dangerous, possibly contagious, and shameful as it is believed to be transmitted by saliva, urine or breath itself.
Nigeria comprised of 36 states in Africa, Africa's most populated country, setting a precedent for the entire country: A survey done at a Medical School in Nigeria showed that 40% of medical students were not sure that epilepsy was not contagious. According to current data, one out of every four Africans is Nigerian.2 Presently, Nigeria is the seventh most populous country in the world, and even conservative estimates conclude that more than 20% of the world's black population lives in Nigeria. 2006 estimates claim 42.3% of the population is between 0–14 years of age, while 54.6% is between 15–65; the birth rate is significantly higher than the death rate, at 40.4 and 16.9 per 1000 people respectively.3
Health, health care, and general living conditions in Nigeria are poor. Life expectancy is 47 years (average male/female) and just over half the population has access to potable water and appropriate sanitation; the percentage is of children under five has gone up rather than down between 1990 and 2003 and infant mortality is 97.1 deaths per 1,000 live births: almost 1:10.4 HIV/AIDS rate in Nigeria is much lower compared to the other African nations such as Kenya or South Africa whose prevalence (percentage) rates are in the double digits. In 2003, the HIV prevalence rate among 20 to 29 year-olds was 5.6%5 Nigeria suffers from periodic outbreaks of cholera, malaria, and sleeping sickness. It is the only country in Africa to have never eradicated polio, which it periodically exports to other African countries. A 2004 vaccination drive, spearheaded by the World Health Organization to combat polio and malaria, met with some opposition in the north, but polio was cut 98% between 2009 and 2010.6
Because Nigerians represent 1 in 4 Africans and the Doctors surveyed at a Medical School there 40% were unsure if Epilepsy is contagious, it has been one of the worst countries as far as the impact on life in general for a person living with Epilepsy. Here are some smaller African countries and their beliefs surrounding Epilepsy as shown below in the following African countries.
Kenya in an area that is inhabited by nomadic people a 14 year old girl was buried alive by her own parents because they believed that she was possessed and was harboring evil spirits. In Uganda it is commonly believed that Seizures are caused by an actual Lizard of unknown origin spinning around in the head of the person. Malawi believe that an insect that is moving inside the stomach causes epilepsy.
Throughout history, people with Seizures have been regarded as different from the rest of humanity. Thanks to modern medicine and the Research into Neurology, education and the access to medical treatment and follow-up, this belief is slowly changing.
However, Epilepsy in developing countries, such as Africa, is found to be caused by poor living conditions where victims are exposed to a host of parasitic and infectious disease largely absent in industrialized countries. Malaria in Africa may indirectly lead to Epilepsy, as may malnutrition and under-resourced health care at the pre-, peri-, and postnatal levels.
Current hope from the USAID for Malaria prevention, and thus, less people suffering from Epilepsy:
“Through the new IRS contract, the President's Malaria Initiative, led by USAID and implemented together with the Centers for Disease Control and Prevention (CDC), will provide technical and financial support to the Ministries of Health and National Malaria Control Programs in African countries to build country-level capacity for malaria prevention activities. The $189 million, there-year contract awarded by USAID to Abt. Associates will cover the implementation of IRS activities in Angola, Benin, Burkina Faso, Ethiopia, Ghana, Liberia, Madagascar, Mali, Mozambique, Nigeria, Rwanda, Senegal, Zambia, and Zimbabwe, with the possibility of expansion based on malaria control needs and availability of resources.
Activities include assessing the environment to ensure safe and effective use of insecticides, evaluating mosquito abundance and susceptibility to the insecticides, educating residents about IRS and how they should prepare their house for spraying, training spray teams, procuring insecticide and equipment, and monitoring and evaluating spraying activities.
"Here in Washington, a mosquito bite is a fleeting nuisance. But in all too many places, that sudden sting and scratch can be a death sentence. In a world being bound ever closer together, those places do not seem so far away," said Rear Adm. (RET) Tim Ziemer, U.S. Malaria Coordinator. "Preventing and treating malaria saves lives, contributes to a reduction in all-cause under-five mortality, improves the health of children in malaria-burdened regions, and contributes to socioeconomic development in areas most affected by malaria."
The United States is focusing on building capacity within host countries by training people to manage, deliver, and support the delivery of health services, which will be critical for sustained successes against infectious diseases like malaria. PMI continues to introduce and expand four proven and highly effective interventions in each of the target countries. Scale-up of the four interventions is complemented by a strong focus on extending expanding access in rural and underserved communities and further expanding community engagement for malaria prevention and control.
According to the World Health Organization, the estimated number of global malaria deaths has fallen from about 985,000 in 2000 to about 781,000 in 2009. In spite of this progress, malaria remains one of the major public health problems in sub-Saharan Africa, where malaria is the leading cause of death for children under five. Because malaria is a global emergency that affects mostly poor women and children, malaria perpetuates a vicious cycle of poverty in the developing world. Malaria-related illnesses and mortality cost Africa's economy alone $12 billion per year. “7 To make a donation to the USAID, specifically targeting the Crisis in the Horn of Africa: Across the eastern Horn of Africa, more than 12 million people are now in need of emergency assistance to survive. The United States is one of the largest donors of emergency assistance to the region, helping more than 4.6 million of those in need and providing over $580 million to date in fiscal year 2011. Make a donation to end Malaria for millions in Africa today, or learn more: http://www.usaid.gov/hornofafrica/
Neurocystercosis (NCC) is another known cause of Epilepsy that is an infection of the central nervous system with cysticerci of the pork tapeworm. Studies from Latin America have shown that infection of the brain by the larvae of the pork tapeworm Taenia solium is an important cause of epileptic seizures in endemic communities. How many people in developing countries could actually link their Epilepsy as being caused by NCC from Pork? 30%!
"Thirty percent of all people suffering epilepsy in countries where tapeworm is frequent - i.e. in developing countries where pork is consumed - also suffer from NCC," said epidemiologist Christine Budke, presenting her preliminary findings to a food safety meeting in Geneva last week (29 October).
Arve Lee Willingham, deputy director of the WHO/FAO Collaborating Center for Parasitic Zoonoses, said the 30 percent figure was "far higher than anyone had ever thought possible". Fifty million people worldwide are affected by NCC, resulting in 50,000 deaths in developing countries. Research published in 2004 suggested 2–3 million people in Sub-Saharan Africa alone suffer from NCC-related epilepsy.8
An excerpt from an article from Uganda’s main website, from 25 April, 2010, Titled: “Uganda: Take Another Look Before your order a second Stick of Pork,” Shows the NCC problem in Africa, as well as the common views of African as a society view on Epilepsy itself:
”Kampala - IT happened so fast. In the middle of the end of term examinations, I fell off my desk and hit my head on the floor. I kicked like I was possessed by demons and my eyes turned white. Other students ran out of the examination room. Teachers who were supervising the exams rushed me to the sick bay. Later, I was referred to Mulago Hospital." This is the story of Moses, who has battled epilepsy for three years.
It is a similar experience for Joseph, who works for a non-governmental organization in Jinja. "I fell off a boda boda while going for community mobilization. I sustained several injuries and was admitted for two months. After being discharged, I was told I had epilepsy." Joseph's relatives attribute the problem to witchcraft. They do not believe that Joseph, who has not had the problem since childhood, could get it in adulthood.
It is a common belief in Africa that epileptic people are victims of witchcraft. Justine Engole, the programme officer of the Epilepsy Support Association Uganda, says studies carried out by the association show that 50% of the people affected by the disease believe it is caused by witchcraft and that intensive sensitization on the likely causes of the illness is still a challenge.