The Other Side: Living with Multiple Sclerosis
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When Young Giovanni Battista Left Italy for Montevideo, Uruguay, on a ship, little did he know he would soon find himself an orphan in Brazil, entirely on his own, forced to learn a new language and assimilate into a new culture, move frequently to find better jobs, travel by foot and horse to build a house, clear land in the wilderness, and manage a huge plantation in the backcountry.
All along, Young Battista faced insurmountable challenges, such as shooting an angry jaguar in the Brazilian rainforest, and then returning to find his plantation helpers either sick or kidnapped. Alone yet again, Battista somehow found the courage to fight on, make some new friends, and emigrate to a third country.
It was here in the United States of America that he married, raised a family, became a citizen, and got his first job in a factory. Never did Battista forget how his life had been long ago, nor did he complain nor ever asked why things had changed so much. Courage had taken him a long way.
Giovanni Battista was my grandfather. His life, the lives of my parents, as well as my entire life are chronicled in this book. I wish to inspire you with the courage that Ive inherited and the will to live life in the greatest manner possible.
Janet M. Cogoli
Janet Cogoli, M.D., not only has treated MS patients but has also experienced, for over thirty years, the problem herself. Empathy, encouragement, and information on what and why it may happen, when one is afflicted by MS, is written in a friendly, easy-to-understand manner for patients, their friends, families, caretakers, and all interested others. Tips are equally offered on how difficult problems may be managed. Though diagnosed with the disease one year after graduating from Mount Holyoke College in South Hadley, Massachusetts, Dr. Cogoli obtained her medical degree from the University of Massachusetts and then trained in Physical Medicine and Rehabilitation at the Mayo Clinic in Rochester, Minnesota. After practicing for several years in Camden and Mount Holly, New Jersey, she returned to Massachusetts. With a partner, she started Fairlawn Rehabilitation Hospital in Worcester, Massachusetts. Dr. Cogoli currently resides in Shrewsbury, Massachusetts.
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The Other Side - Janet M. Cogoli
© 2011 Janet M. Cogoli, M.D.. All rights reserved.
No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.
First published by AuthorHouse 07/14/2011
ISBN: 978-1-4634-0808-4 (sc)
ISBN: 978-1-4634-0809-1 (ebk)
Library of Congress Control Number: 2011908711
Printed in the United States of America
Any people depicted in stock imagery provided by Thinkstock are models,
and such images are being used for illustrative purposes only.
Certain stock imagery © Thinkstock.
This book is printed on acid-free paper.
Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.
DEDICATION
This book is for my deceased parents,
Shirley Rose (Ledoux) Cogoli and
William Joseph Cogoli.
To them, I owe all good things in life.
To my deceased brother,
William Edward Cogoli,
who spoke my language, was my adventurous partner,
and always reminded me of life’s realities.
To my many doctors, teachers, and professors,
who have always tried their best.
To my CNAs,
who have been with me in both good times and bad
and have helped me in so many ways.
To all of the MS patients whom I have met in my practice and to the many others with MS nationwide, as well as their families.
My love to you all:
Without your presence, I could not have enjoyed life as I have.
Contents
Preface
Definition of Multiple Sclerosis
Neuroanatomy
Forebears’ History
Family History
Personal History
Multiple Sclerosis Symptoms
Epilogue
Bibliography
Preface
This is an account of my private and professional experience with multiple sclerosis. It has been thirty years since I was diagnosed. I am a physician and a patient. I have studied it, treated it, suffered with it, and now I would like to empathize with others also affected by this disease. I hope that this book will improve understanding by other professionals. I will be writing this as an autobiography, though I acknowledge that everyone has his or her own unique, important story.
I am a physiatrist (physical medicine and rehabilitation), not a neurologist, and do not mean this to be a textbook. So, some of the information herein has not been researched extensively nor written with this in mind. Please critique it kindly.
My specialty deals with helping people reach their maximum functional potential, despite physical disability. There are a number of professionals involved in the rehabilitation process, including physical therapists, occupational therapists, speech therapists, social workers, rehab nurses, and neuropsychologists. Doctors such as orthopedic surgeons, internists, and urologists are also team members.
The physiatrist is an M.D. or a D.O. who coordinates the patient’s care with the therapists’ roles. The physiatrist must be familiar with the medical and social needs of the patient. Since negotiation with insurance companies is usually necessary, the physiatrist must also be the patient’s advocate.
Please enjoy and think of this book as a friendly conversation between you and me. It is written for you, your family, and interested others. Again, this is not a textbook; there are many good ones already published.
The book begins with a definition of multiple sclerosis, and then a section on neuroanatomy follows. The neuroanatomy has been simplified in order to be easily understood. It should help with the explanations of multiple sclerosis symptoms.
The next part will be a history detailing the lives of my grandfather and my parents. I hope that you find this interesting and of value. These people have given me inspiration, courage, and hope. Then I’ll describe my personal history and the problems I’ve had with multiple sclerosis.
In the contents, I’ll address some of the more common symptoms and give explanations for their occurrence, as well as the ways of dealing with them that have been successful for others and me.
This section will also include both medicines that are currently in use and others being investigated.
Definition of
Multiple Sclerosis
Multiple Sclerosis (MS, hereafter used interchangeably) is an autoimmune disease affecting the central nervous system (CNS). Autoimmune is a term that refers to antibodies produced against the host itself, and while it has been proven that the autoimmune system is involved, exactly how is not yet known. Attempts to find an infectious