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Your trusted, compassionate guide to living with MS Being diagnosed with multiple sclerosis (MS) doesn't mean your life is over. Everyone's MS is different and no one can predict exactly what yours will be like. The fact is, lots of people live their lives with MS without making a full-time job of it. Multiple Sclerosis For Dummies gives you accessible, easy-to-understand information about what happens with MS--what kinds of symptoms it can cause, how it can affect your life at home and at work, what you can do to feel and function better, and how you can protect yourself and your family against the long-term unpredictability of the disease. You'll learn how to make treatment and lifestyle choices that work for you, what qualities to look for in a neurologist and the rest of your healthcare team, how to manage fatigue, the pros and cons of alternative medicine, why and how to talk to your kids about MS, stress management strategies, your rights under the Americans with Disabilities act, and so much more. * Covers major medical breakthroughs that slow the progression of the disease and improve quality of life for those living with MS * Helps those affected by MS and their family members understand the disease and the latest treatment options * Helpful and trusted advice on coping with physical, mental, emotional, and financial aspects of MS Complete with listings of valuable resources such as other books, websites, and community agencies and organizations that you can tap for information or assistance, Multiple Sclerosis For Dummies gives you everything you need to make educated choices and comfortable decisions about living with MS.
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Table of Contents
Multiple Sclerosis For Dummies®
by Rosalind Kalb, PhD, Barbara Giesser, MD, and Kathleen Costello, MS, ANP-BC, MSCN
Foreword by David Baldacci
The New York Times bestselling author of 23 novels
Multiple Sclerosis For Dummies®
Published byJohn Wiley & Sons, Inc.111 River St.Hoboken, NJ 07030-5774
www.wiley.com
Copyright © 2012 by John Wiley & Sons, Inc.
Published simultaneously in Canada
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ISBN 978-1-118-17587-3 (pbk); 978-1-118-22714-5 (ebk); 978-1-118-24008-3 (ebk); 978-1-118-26477-5 (ebk)
Manufactured in the United States of America
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About the Authors
The authors’ shared commitment to multiple sclerosis (MS) is of historic proportions. Drs. Kalb and Giesser first worked together more than 30 years ago at the MS Care Center at the Albert Einstein College of Medicine, under the direction of Labe Scheinberg, MD, who is considered by many to be the father of MS comprehensive care. Kathleen Costello is a relative newcomer; she joined the field only 24 years ago. For each of us, MS was, is, and will be our chosen career.
Rosalind Kalb, PhD, is Vice President of the Professional Resource Center at the National Multiple Sclerosis Society in New York City, a service for clinicians involved in MS care. After completing her doctorate in clinical psychology at Fordham University in 1977, Dr. Kalb began her career at the MS Care Center, providing individual, group, and family therapy for people living with MS. Dr. Kalb is the editor of two books on MS — Multiple Sclerosis: The Questions You Have, The Answers You Need, 5th edition (Demos Medical Publishing) and Multiple Sclerosis: A Guide for Families, 3rd edition (Demos Medical Publishing). She is also coauthor, along with Nicholas LaRocca, PhD, of the book Multiple Sclerosis: Understanding the Cognitive Challenges (Demos Medical Publishing).
Barbara Giesser, MD, is a Clinical Professor of Neurology and Clinical Director of the MS Program at the University of Los Angeles (UCLA) David Geffen School of Medicine. She also serves as the Medical Director of the UCLA Marilyn Hilton MS Achievement Center. Dr. Giesser has specialized in the care of people with MS since 1982, beginning with her training at the MS Care Center. She has published research in the areas of cognition, gender issues, and rehabilitation strategies in persons with MS, and recently edited the Primer on Multiple Sclerosis (Oxford University Press). Dr. Giesser lectures widely and has developed educational materials about MS for medical students, residents, healthcare professionals, and people with MS for the National MS Society and the American Academy of Neurology.
Kathleen Costello, MS, ANP-BC, MSCN, is a certified Adult Nurse Practitioner, Multiple Sclerosis Nurse, and Multiple Sclerosis Specialist. She received her BS and MS from the University of Maryland. In her role as Adult Nurse Practitioner and Research Associate at the Johns Hopkins MS Center in Baltimore, she is part of a team that provides evaluation and management of people with MS. She is Executive Director of the Johns Hopkins Project Restore, which helps raise awareness and funding for MS and transverse myelitis (TM) research initiatives at the Johns Hopkins MS and TM Centers. Ms. Costello is a past president of the International Organization of Multiple Sclerosis Nurses (IOMSN) and is currently a member of the IOMSN Research Committee. Ms. Costello has written and lectured extensively on MS and MS care.
Dedication
We dedicate this book to our teachers — beginning with Labe Scheinberg, MD, who launched a generation of clinicians committed to the care of people with MS and their families, and Kenneth Johnson, MD, who played a pivotal role in the development of effective MS treatments — and ending with our patients and colleagues who have taught us everything else we know about this disease.
Authors’ Acknowledgments
Okay, it’s time to admit that we didn’t do this all by ourselves. We need to thank quite a few people for their assistance along the way:
Stephen Reingold, PhD, for his ongoing encouragement, wealth of knowledge, and willingness to share the initial brainstorm.
Kimberly Calder, MPS, and Steven Nissen, MS, CRC, from the National MS Society for their time, expertise, and commitment to helping people with MS develop and maintain their vocational and financial safety nets.
Nancy Reitman, RN, MA, for her behind-the-scenes research.
Cyndi Zagieboylo, CEO of the National MS Society, Lisa Skutnik, PT, Executive Vice President of Clinical Programs at the National MS Society, and Lisa Risi, Chief Financial Officer of the National MS Society, for their dedication to people affected by MS and their enthusiastic support of this project and its authors.
And thank you to the amazing group at Wiley:
Lindsay Lefevere — the Executive Editor who paved the way for this second edition full of new information and recent developments in MS management.
Chad Sievers — our Project Editor who patiently guided us through every step.
George Garmany, MD — our technical reviewer, for his wisdom, expertise and thoughtful commentary.
Publisher’s Acknowledgments
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Some of the people who helped bring this book to market include the following:
Acquisitions, Editorial, and Vertical Websites
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(Previous Edition: Lindsay Lefevere)
Executive Editor: Lindsay Lefevere
Copy Editor: Chad R. Sievers
(Previous Edition: Jessica Smith)
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Technical Editor: George Garmany, MD
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Publishing and Editorial for Consumer Dummies
Kathleen Nebenhaus, Vice President and Executive Publisher
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Publishing for Technology Dummies
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Foreword
I had just started law school at the University of Virginia when my sister called and asked if she could visit me in Charlottesville. She had something to tell me. It was the fall of 1983, and I had moved from Richmond to begin three years at UVA trying to learn what it was that lawyers actually did.
Back then my sister was a newspaper reporter. When I was in college, I went with her on some of her reporting beats. She attended town council meetings and spoke with citizens gathering to query their elected representative. She was the ultimate professional. To her the truth was paramount.
So when she came to UVA I expected her to tell me that she had taken another job at another newspaper. I had always assumed that my sister would end up working for The Washington Post, or maybe even The New York Times.
We started walking around campus. She talked, but quite frankly, all I could think about was my new life. I wanted to tell her about what I was doing, feeling, thinking. She kept speaking quietly, and I kept nodding and my mind kept wandering to what I would say once she had finished.
But then I focused. Something I should have done when she first started speaking.
“I have MS,” she said.
In an instant UVA and my law career were forgotten. I sat down next to her. I looked at her closely. She didn’t look sick. I remember we used to collect money for the Jerry Lewis Telethon when we were kids. But that was Muscular Dystrophy. Those kids all looked desperately ill.
What are the doctors going to do? I asked her.
What they can, she replied. She paused. It’s chronic, she added. There is no cure. I’ll have it for the rest of my life.
My sister’s life had changed and that day so had mine.
I soon discovered that so much misinformation is out there about MS. Although it’s still one of the most misdiagnosed diseases, more worthy and helpful information sources are available.
Multiple Sclerosis For Dummies, 2nd Edition, is one of them. It helps to empower those individuals who have MS, as well as their family, friends, and other members of their support team. It helps one navigate the field of chronic illness, making complex issues less so, helping to sort, organize, and make comprehensible so much that is disorganized and incomprehensible about MS. Yet Multiple Sclerosis For Dummies, 2nd Edition, is not simply a book on the disease. It is a tool with which to live. Offering practical advice, anecdotal experiences, humor, and most importantly of all, hope, it shows that no one with MS is alone. A broad community exists of those individuals with MS and a broader support group composed of family, friends, and healthcare professionals.
No one book can be a cure-all or the only source one turns to. Yet this book is also a gateway to many other sources of information and provides those resources throughout its pages. It can lead folks to where they need to go in seeking help, understanding, and even an opportunity to smile or laugh.
As an author I can tell you that books make great friends. For those with MS, this book will not only make a great friend, it will also stay with you for the long haul. You can turn to it again and again for knowledge, comfort, and a way to help you or your loved one control the disease instead of the other way around.
No one can say that researchers are winning the war against MS yet, and it continues to challenge, and at times overwhelm, the people it affects, along with their families and friends. But what MS can’t do is unilaterally rob people of their spirit to fight it and to live life on their terms, despite changes in the brain and body. The human spirit is wonderfully resilient. In fact, it may be the most powerful defensive mechanism any of us has.
Multiple Sclerosis For Dummies, 2nd Edition, is a terrific resource to have at one’s side. It can lift the fog of an inscrutable disease, bring a smile to one’s face when it is desperately needed, and bring hope when things look hopeless. A lot of power is packed into the pages. I encourage anyone with MS, their family, and friends to use it.
--David Baldacci
Introduction
Being diagnosed with multiple sclerosis (MS) is definitely a bummer, but living with it doesn’t have to be. This book is all about how to live your life with MS without making a full-time job of it. After diving in, you’ll be more informed and more prepared no matter how your MS behaves.
If you’ve never heard of MS before and you want to know what may be in store, this book is definitely for you. You also want to take a gander through this book if all you’ve ever heard about MS is the bad stuff. We suggest this because the fact is, you’ve probably met several people at work, at the gym, or in your neighborhood who have MS and you didn’t even know it. And even if the people you happen to know with MS don’t seem to have a symptom or care in the world, you now have another good reason to keep reading: Everyone’s MS is different, and no one can predict exactly what yours will be like.
The three of us — a neurologist, a nurse, and a psychologist — have worked with, and learned from, people with MS for a total of 88 years, if you add our careers together end to end! We wrote this book as a team effort so we could send a loud and clear message that you’re not alone. Health professionals trained in neurology, nursing, psychology, rehabilitation medicine, and a variety of other disciplines, as well as voluntary organizations, such as the National Multiple Sclerosis Society, are ready to help you every step of the way.
About This Book
Don’t worry: In this second edition of Multiple Sclerosis For Dummies, we’re not going to try to tell you everything there is to know about MS. Instead, we only give you what you need in order to make educated choices and comfortable decisions — including new and updated info about medications to slow disease progression and manage MS symptoms, recent and anticipated changes in healthcare reform in the United States, and exciting news on the research front. We provide lots of information that’s easy to access and easy to swallow regarding what happens in MS — what kinds of symptoms it can cause, how it can affect your life at home and at work, what you can do to feel and function up to snuff, and how you can protect yourself and your family against the long-term unpredictability of the disease. We also throw in useful tips, introduce you to the members of your healthcare team, and point you in the direction of a growing array of useful resources. And we even promise to make you chuckle once or twice along the way.
Feel free to pick and choose what you want to read — you don’t have to take a cover-to-cover approach if you’re more comfortable with a hop, skip, and jump style. Each chapter tackles a different aspect of living with MS so that you can zero in on the stuff that’s most relevant to you.
Conventions Used in This Book
We used the following conventions throughout the text to make things consistent and easy to understand:
All web addresses appear in monofont.
New terms appear in italics and are closely followed by an easy-to- understand definition.
Bold is used to highlight the action parts of numbered steps.
Because most people with MS receive their MS-related care from a neurologist (a physician who specializes in the diagnosis and treatment of diseases of the nervous system), we use the terms neurologist,doctor, and physician interchangeably whenever we’re referring to the person who’s treating your MS. When we’re talking about other medical specialists — such as internists, family practice doctors, urologists, gynecologists, physiatrists, psychiatrists — we refer to them by their specialty titles.
We talk about a lot of medications in this book, which you may or may not ever need. In case you do, we always give the brand name first, because that’s the one you’re most likely to see in advertisements or hear other people talk about, followed by the chemical name in parentheses.
What You’re Not to Read
Even though we poured heart and soul into every page of this book, we know that you won’t want to read it all — and most likely you won’t need to. So we make it easy for you to identify “skippable” material by sticking it into sidebars. This is the stuff in the gray boxes that’s interesting and related to the topic at hand but not essential for your health and well-being.
Foolish Assumptions
Even though no two people have MS in exactly the same way, we assume that you — our readers — still have quite a few things in common. We’ve written this book with these thoughts about you in mind:
You have MS or care about someone who does.
However much you already know about MS, you want to know more — in language that’s easy to access and easy to understand.
You’re looking for ways to manage your MS and the symptoms it can cause.
You want to be healthy, active, and productive in spite of whatever challenges MS is throwing your way.
You wish you had a crystal ball, but you’re willing to settle for some helpful suggestions on how to deal with the unpredictability of MS.
How This Book Is Organized
This book is divided into six parts to help you gather all the information you need about MS. However, every part can stand alone, so you don’t have to read one before another. In fact, if you’re looking for only a few things in particular, just check out the table of contents or the index and skip directly to those topics. The following is a rundown of the six parts.
Part I: When MS Becomes Part of Your Life
Whether MS has entered your life with a bang or a whimper, you need to know what it’s all about. So, in this part, we fill you in on the basic facts as well as the big mysteries that remain to be solved. We show you the usual steps involved in getting a diagnosis and suggest ways to handle any reactions that you may have during those early days (as well as those that may crop up as the realities of the disease begin to sink in). This part also gives you good ideas on how to begin making room in your life for a chronic, unpredictable illness — without giving it more attention than it needs.
It’s always good to know that you don’t have to deal with tough stuff on your own — so, in this part, we also spend some time introducing you to the healthcare professionals who are going to help you manage your MS.
Part II: Taking Charge of Your MS
The best way to feel more confident in the face of any new challenge is to come up with a game plan. And you’re in luck because this part of the book is designed to do just that. It helps you get started with the planning process and gives you tips on how to work with your healthcare team to make the treatment choices that best meet your needs.
Each chapter describes a part of the MS treatment package — including all the immediate and longer-term strategies for slowing disease activity, dealing with pesky relapses, and managing symptoms. We talk about the importance of early treatment and describe each of the available options in detail. And we zero in on ways to manage the physical symptoms that can pop up along the way, as well as the ones that can mess with your head, such as mood changes and problems with memory and thinking.
Alternative medicine is a hot topic for people with MS, so in this part we also give you pointers on how to sift through the available products and services to find those that are safe and effective for people with MS. And we fill you in on the latest information about a controversial topic in the MS world — chronic cerebrospinal venous insufficiency (CCSVI).
Part III: Staying Healthy and Feeling Well
You can be healthy with MS — in fact, the healthier you are, the better you’re going to feel. So, this part is all about how to take care of yourself with a healthy, balanced diet, the right kind of exercise, restful sleep, and some good stress management strategies.
Throughout the chapters of this part, we emphasize the importance of looking beyond your MS (or your family member’s MS) to develop an overall wellness plan involving regular checkups by your family doctor and dentist and the preventive health screens recommended for your age group.
In this part, we also give you an idea of what to do when your MS isn’t behaving very nicely. When the disease progresses in spite of available treatments, it’s important to know how to manage your symptoms, avoid messy complications, and keep your life on track.
Part IV: Managing Lifestyle Issues
The key to coping well with your MS is finding ways to fit it into your life. So, in this part, we begin with a reminder that people’s responses to your MS depend in large part on how you present it to them. We then go on to give you strategies for helping others understand what your MS is all about.
We also include a chapter that shows how to make MS part of the family. This chapter describes the ways in which families are affected when someone they love gets MS, and it also shares tips to help family members communicate and problem-solve more comfortably.
Because MS is diagnosed most often during early adulthood, when people are busy starting or adding to their families, this part fills you in on all the good news for prospective parents (yes, people with MS can have happy, healthy kids!). It gives you lots of parenting tips to help you deal with those bundles of joy that quickly grow into toddlers and teens.
Part V: Creating Your Safety Nets
The hallmark of MS is its unpredictability. Because everyone’s MS is different and no one has a crystal ball, anxiety about the future is pretty common. To reduce that anxiety as much as possible, this part is all about making sure that you’re armed and ready to deal with whatever comes along.
We give you tips on how to stay in the work force as long as you’re interested and able, strategies for getting and maintaining insurance coverage, and recommendations for how to plan effectively for the unpredictable future. When you’re living with MS, developing these kinds of safety nets can help you feel less vulnerable and more in control.
Part VI: The Part of Tens
In this part, we give you key information in a handy top-ten format. One chapter lists the mistaken notions about MS that you can finally put to rest, and another highlights ten intriguing areas of MS research. We top off this part with ten strategies to make traveling with MS as trouble-free as possible.
In this part, you also find a helpful glossary. Take advantage of the glossary to look up any of those technical words that trip you up when you’re reading about MS, attending an educational program, or even talking to your doctor. There’s nothing like getting some of the techno-jargon under your belt to help you feel more prepared for everything you’ll see and hear in the days ahead.
Icons Used in This Book
To make this book easier to read and simpler to use, we include some icons that can help you pick out the key ideas and points of information throughout the book.
This icon highlights shortcuts that help you conserve valuable resources, such as energy, time, and money.
When you see this icon, it tells you that the information that follows is essential and that you should keep it in mind as you deal with your MS.
This icon flags dangers to your health, safety, or general well-being.
This icon reminds you when it’s time to check in with your neurologist or another specialist on your healthcare team.
Where to Go from Here
This book is organized so that all you need to do is shut your eyes and point in order to find complete information about one aspect of MS or another. If you prefer the eyes-open method but aren’t sure where you want to start, we recommend Part I. It gives you basic info about MS and how it’s diagnosed, as well as some tips for sorting out all of the feelings that an MS diagnosis can stir up. If you’ve already been there and done that, you may want to check out specific treatment strategies in Part II, or discover ways to feel more bright-eyed and bushy-tailed in Part III. If you’re wondering how MS may affect your relationships with the important people in your life, you can focus on Part IV. And if you’re someone who likes to get all your ducks in a row from the get-go (and even if you’re not), you can check out Part V for suggestions on how to feel securely prepared in spite of the unpredictability of MS. No matter where you choose to begin, begin now. Make it your priority to educate yourself about MS and the strategies you and your family members can use to live well in spite of it.
Part I
When MS Becomes Part of Your Life
In this part . . .
We’re guessing that multiple sclerosis (MS) has recently become part of your life. Either you or someone you care about has been diagnosed with MS and you’re wondering what it’s all about. This part gives you the big picture, starting with an overview of what doctors know — and don’t know — about this chronic, unpredictable disease and what you can do to live comfortably and productively in spite of it. The good news is that you aren’t ever alone in your efforts to overcome the challenges of MS — your healthcare team, which we introduce to you in this part, will always be right beside you.
Chapter 1
Meeting MS Face to Face
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!
Lesen Sie weiter in der vollständigen Ausgabe!