Authors: Rosalind Kalb Ph.D., Barbara Giesser MD, Nancy Holland RN, EdD, MSCN, David L. Lander
ISBN-13: 9780470055922, ISBN-10: 0470055928
Format: Paperback
Publisher: Wiley, John & Sons, Incorporated
Date Published: February 2007
Edition: (Non-applicable)
The authors’ shared commitment to multiple sclerosis (MS) began more than 25 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.
Rosalind Kalb, PhD, is Associate Vice President of the Professional Resource Center at the National Multiple Sclerosis Society in New York City. After receiving her doctorate in clinical psychology from 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 author of the National MS Society’s Knowledge is Power series for individuals newly diagnosed with MS and is an editor of Keep S’myelin, the newsletter for children who have a parent with MS. Dr. Kalb has edited two books on MS — Multiple Sclerosis: The Questions You Have, The Answers You Need, 3rd Edition (Demos Medical Publishing, 2004), and Multiple Sclerosis: A Guide for Families, 3rd Edition (Demos Medical Publishing, 2006). She is also coauthor, along with Nicholas LaRocca, PhD, of the book Multiple Sclerosis: Understanding the Cognitive Challenges (Demos Medical Publishing, 2006).
Nancy Holland, EdD, RN, is Vice President of Clinical Programs at the National Multiple Sclerosis Society in New York City. Prior to joining the Society, Dr. Holland served as the MS Care Center’s Clinic Coordinator and Director of Training for 15 years. She is a founding director of the International Organization of MS Nurses. She is also author or editor of more than 60MSrelated articles, chapters, and books, including Comprehensive Nursing Care in Multiple Sclerosis, 2nd Edition (Demos Medical Publishing, 2002), Multiple Sclerosis: A Self-Care Guide for Wellness, 2nd Edition (Demos Medical Publishing, 2005), and Multiple Sclerosis: A Guide for the Newly Diagnosed, 3rd Edition (Demos Medical Publishing, 2007). Dr. Holland earned a doctorate in higher and adult education from Columbia University, and holds undergraduate and graduate degrees in nursing.
Barbara Giesser, MD, is an Associate 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 persons with MS since 1982, beginning with her training at the MS Care Center. She has been an invited lecturer to speak about MS in regional, national, and international venues, and has published research in the areas of cognition, gender issues, and rehabilitation strategies in persons with MS. Additionally, she has been active in developing educational materials about MS for medical students, residents, healthcare professionals, and people with MS for organizations including the NMSS and the American Academy of Neurology.
Book Synopsis
Being diagnosed with multiple sclerosis (MS) doesn’t have to 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.
MS for Dummies gives you easy to access, 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 up to snuff, and how you can protect yourself and your family against the long-term unpredictability of the disease. You'll learn:
- Why some people get MS and others don’t
- How to make treatment and lifestyle choices that work for you
- What qualities to look for in a neurologist and in the rest of your healthcare team
- How to manage fatigue, walking problems, and visual changes
- Why the road to diagnosis can be full of twists and turns
- How to understand the pros and cons of alternative medicine
- Why and how to talk to your kids about MS
- How to find stress management strategies that work for you
- Your rights under the Americans with Disabilities Act
Complete with listings of valuable resources such as other books, Web sites, and community agencies and organizations that you can tap for information or assistance, MS for Dummies will tell you everything you need to know in order to make educated choices and comfortable decisions about life with MS.
Table of Contents
Foreword xix
Introduction 1
About This Book 1
Conventions Used in This Book 2
What You're Not to Read 2
Foolish Assumptions 2
How This Book Is Organized 3
When MS Becomes Part of Your Life 3
Taking Charge of Your MS 3
Staying Healthy and Feeling Well 4
Managing Lifestyle Issues 4
Creating Your Safety Nets 5
The Part of Tens 5
Appendixes 5
Icons Used in This Book 6
Where to Go from Here 6
When MS Becomes Part of Your Life 7
Meeting MS Face to Face 9
Introducing the Roles Your Immune and Nervous Systems Play in MS 10
The immune system: Your body's frontline defender 10
The nervous system: Your body's CEO 10
What happens in MS 11
Taking advantage of the body's natural healing process 13
Exploring Possible MS Triggers 14
Gender clues 14
Ethnic or racial clues 15
Geographical clues 15
Genetic clues 16
Lifestyleclues 16
Understanding Why Your MS is as Unique as Your Fingerprint 17
Distinguishing the four disease types 17
Scanning the possible symptoms 19
Perusing the MS Treatment Menu 19
Recognizing How Your MS Affects Your Loved Ones 21
Talking about the tough stuff 21
Keeping daily life on track 22
Maintaining healthy partnerships 22
Becoming confident parents 22
Minimizing the Impact of MS on Work and Play 23
Taking Steps to Protect Your Quality of Life 24
So, What Is it, Doc? Getting a Diagnosis 25
Clarifying the Diagnostic Criteria 25
Getting Familiar with the Neurologist's Diagnostic Tools 27
Medical history 28
Neurologic exam 28
Various medical tests 30
Identifying a clinically isolated syndrome 35
Understanding Why the Road to Diagnosis Can Be Full of Twists and Turns 36
You've Been Diagnosed - So What's Next? 37
First Things First: Sorting Out Your Feelings 37
Shock: "This can't be happening" 38
Denial: "This isn't happening" 38
Confusion: "Why me?" 39
Anxiety: "What's going to happen to me?" 39
Anger: "Why can't you fix what's happening to me?" 40
Relief: "Thank goodness - I thought it was something worse!" 40
Deciding on the Next Steps 41
Catch your breath before making any major changes or decisions 42
Have a heart-to-heart conversation with your neurologist about treatment 42
Begin talking about MS with the people in your life 42
Make a commitment to your health 44
Facing the Longer-Term Challenges of a Chronic Illness 44
The how-to of healthy grieving 45
Living with unpredictability 47
Making Treatment and Lifestyle Choices That Work for You 50
Minimizing the stress of decision-making 50
Getting the professional help and personal support you need 51
Creating Your Healthcare Team 53
Working with Your Physician 53
Finding a neurologist with the qualities you value 54
Establishing a pattern of routine care 56
Making the most of your doctor visits 56
Knowing when to call in the MS specialist 58
Getting a second opinion 59
Rounding Up Other Key Players 60
The nurse for education, guidance, and support 60
The rehabilitation specialists to help you keep on truckin' 61
The mental health specialists to help you keep your head on straight 63
The general medical doctors 65
Considering Comprehensive MS Treatment Centers 65
Taking Charge of Your MS 67
Developing Your Management Plan to Take Charge of Your MS 69
Using Multiple Strategies to Manage MS 69
Modifying the disease course 70
Managing acute relapses 70
Taking charge of your symptoms 71
Enhancing function through rehabilitation 71
Providing psychosocial support 72
Taking care of your health 72
Tapping Your Creativity and Flexibility 73
Creating Your Own Treatment Template 74
Managing the Disease Course and Treating Relapses 77
Managing the Disease Course 78
Understanding the whys and wherefores of early treatment 78
Getting familiar with the immunomodulators 79
Turning to immunosuppressants 85
Setting realistic expectations for the DMTs 86
A word about primary-progressive MS 87
Managing Relapses 88
Defining a relapse 88
Treating an acute relapse 90
Getting Comfortable with Your Treatment Decisions 93
Managing Fatigue, Walking Problems, Visual Changes, and Tremor 95
Foiling Your Fatigue 96
Identifying and dealing with the causes of fatigue 96
Managing your energy bank to help put your sleepiness to bed 101
Envisioning Solutions to Vision Problems 102
Managing visual symptoms 102
Exploring longer-term management strategies 106
Getting Around Walking Problems 106
Addressing the sources of the problem 106
Using aids to take charge of your mobility 110
Taming Tremor 113
Handling Problems with Bladder and Bowel Function, Pain, Sex, and Speech and Swallowing 115
Eliminating Elimination Problems 115
Managing your bothersome bladder 116
Dealing with your bowel symptoms 119
Sizing up Sexual Symptoms 122
Identifying the changes you may be experiencing 122
Silence isn't golden: Talking is the first step 124
Treating your sexual symptoms 126
Sidestepping Sensory Symptoms and Pain 130
Sorting out Speech and Swallowing Problems 133
Speech and voice problems: Articulating the facts 133
Watching out for swallowing problems 134
Getting Your Head around Problems with Thinking and Mood 137
Handling Problems with Thinking and Memory 137
Defining cognition 138
Understanding how MS can affect your cognition 138
Deciding when an evaluation is in order 141
Knowing what to expect during an evaluation 142
Identifying treatment options 143
Employing practical strategies for managing daily cognitive challenges 144
Managing the Emotional Ups and Downs 145
Controlling mood swings 146
Getting a handle on uncontrolled laughing or crying 147
Dealing with severe depression 148
Considering Complementary and Alternative Medicine 153
Defining CAM 154
Understanding the Allure 155
Putting CAM to the Test 155
Understanding the role of the FDA 156
Sorting out the wheat from the chaff 156
Identifying CAM Interventions That May Be Useful in Managing MS Symptoms 158
Herbs, vitamins, and other CAM options that go into the body 158
Exercise, prayer, and other CAM options done independently or in a class 160
Acupuncture, massage, and other CAM options performed by a practitioner 161
Becoming a Cautious Cam Consumer 162
Staying Healthy and Feeling Well 165
Paying Attention to Your Health - It's Not All about MS 167
Enhancing Your Wellness by Paying Attention to the Whole You 167
Scheduling Routine Checkups to Protect Your Health 168
Making Healthy Eating a Priority 169
Taking MS into account when planning your menu 170
Battling the barriers to healthy eating 171
Improving Your MS and Overall Wellness with Exercise 172
Overcoming the hurdles 173
Exercising your options 174
Maximizing your comfort and safety during exercise 176
Increasing Your Chances of Success 177
Handling Stress without Giving Up Your Life 179
Understanding the Relationship between Stress and MS 179
Recognizing Your Own Signs of Stress 180
From sweaty palms to pounding hearts: Knowing your physical signs of stress 180
Anxiety and irritability: Knowing your emotional signs of stress 181
Identifying the Major Stresses in Your Life 182
Dealing with the devil: Job stress 101 182
Handling family stress with grace and composure 183
Controlling the uncontrollable: Managing your MS stress 183
Developing Your Stress Management Plan 184
Figuring out your priorities 185
Setting realistic goals 185
Cutting yourself some slack 186
Taking some practical steps 186
Tapping available resources 188
Zoning in on your "MS-free zone" 188
Practicing stress management techniques 189
Coping with Advanced MS 191
Scouting Out the Treatment Scene 191
Understanding your disease-management options 192
Exploring ways to feel and function at your best 194
Taking steps to prevent unnecessary complications 195
Maintaining Your Quality of Life 197
Holding on to what's important to you 197
Stay in touch: Preserving your connections with other people 198
Establishing goals and enjoying the satisfaction of meeting them 198
Keeping your self-image well-polished 199
Finding your "MS-free zone" 199
Helping yourself by helping someone else 200
Discovering Long-Term Care Services (Just In Case) 201
Defining long-term care 201
Getting help in your home 202
Looking into adult day care 203
Identifying assisted living options 204
Considering nursing home care 204
Important Tips for Caregivers 205
Managing Lifestyle Issues 207
Presenting Your MS Face to the World 209
Explaining Your MS to Others 209
Providing the basics 210
Dealing with common reactions 211
Remembering that MS is part of you but not all of you 214
Disclosing Your Diagnosis to a Prospective Partner 215
Communicating Your Needs 218
Giving clear messages 218
Staking out your independence 219
P.S. The doctor can't read your mind either 220
Making MS a Part of the Family 221
Addressing Your Family Members' Feelings about Your Diagnosis 221
Communicating Effectively with Adult Family Members 223
Recognizing communication barriers 223
Getting the ball rolling toward more open communication 224
Keeping the Family Rhythm Going so Your MS Doesn't Steal the Show 227
Coping with the direct and indirect costs 228
Managing energy and time 228
Establishing family priorities 230
Problem-solving: Many heads are better than one 230
Building and Maintaining Healthy Partner Relationships 231
Making time for each other 231
Keeping the intimacy alive 232
Maintaining a balanced partnership 233
What to do when one partner can't participate in joint activities 233
Turning a caregiving relationship into a care partnership 234
When Your Child Has MS 235
Helping your adult child with MS 235
Young children and teens get MS too 237
And Baby Makes Three, Four, or More: Planning a Family around Your MS 241
MS and Babies: Here's the Good News! 241
Fertility isn't affected by MS 242
Pregnancy hormones reduce disease activity 242
Pregnancies don't increase a woman's long-term disability level 243
Childbirth isn't a piece of cake for anyone but women with MS do just fine 243
Parents with MS have healthy babies 244
Breastfeeding is definitely an option 244
Considering Key Issues when Making Family-Planning Decisions 245
Minding your medications 245
Remembering that babies don't stay babies very long 246
Facing the uncertainties: The future doesn't come with guarantees 247
Strategies for Smart Decision-Making 247
Consult your MS doctor 247
Evaluate your financial situation 248
Take a good look at your teamwork 248
Check out your support network 249
Have a heart-to-heart with your partner 249
Talk to other parents living with MS 249
Remember that your plans can change 250
Parenting: It Wasn't Easy Before You Had MS! 251
Keeping the Communication Lines Open 252
Telling the kids about your MS makes good sense 252
Sharing info with your children when secrecy is important 254
Finding ways to broach the big issues 255
Explaining those pesky invisible symptoms 256
Parenting around Your MS Symptoms 258
"I'm so tired that I'm in bed before they are!" 258
"How can I be a good dad if I can't even play ball?" 259
"How can I discipline 'em if I can't catch 'em?" 261
Employing Effective Parenting Strategies 262
Call a spade a spade: Let MS take the blame when it needs to 262
Polish up your creativity and flexibility 262
Call on your support network 263
Remember, MS isn't always to blame - other people's teenagers are a pain too 263
Handle little problems before they get bigger 264
Allow kids to be kids 265
Creating Your Safety Nets 267
Keeping Your Place in the Workforce 269
Understanding the High Rate of Unemployment in MS 269
Counting the Reasons to Keep on Truckin' 270
Speed Bumps Ahead: Recognizing the Job-Related Challenges 271
When symptoms get in the way 271
When attitudes get in the way 272
Knowing Your Rights under the ADA 275
Disclosing your MS in the workplace 275
Understanding the terms used in the law 277
Requesting reasonable accommodations 278
Calling in the EEOC 279
Thinking about Leaving Your Job 280
Exhausting your short-term leave options 280
Looking into long-term disability options 280
Making the choices that are right for you 282
Getting a Grip on Insurance 283
Considering Your Health Insurance Options - It's All about Eligibility 283
Employment-based insurance programs 284
Public health insurance programs 284
Self-employment options 285
Options if you don't have health insurance 285
Keeping a Tight Hold on Your Health Insurance 286
Continuing coverage with COBRA 286
Protecting your coverage with HIPAA 289
Seeing COBRA and HIPAA work as a team 290
Understanding the Ins and Outs of Your Health Insurance Plan 290
Filing Successful Insurance Appeals 292
Check your coverage 292
Confirm why coverage was denied or was less than expected 292
File an appeal 293
Replacing Your Income with Disability Insurance 293
Commercial disability insurance 294
Public disability insurance: SSDI 295
A Brief Word about Life and Long-Term Care Insurance 296
Planning for a Future with MS 297
Preparing for the Worst While Hoping for the Best 297
Facing those scary "what-ifs?" 298
Taking charge of your future 298
Navigating the Planning Process: It's as Easy as One, Two, Three 300
Where are you now? 300
What might the future bring? 303
What can you do now to be ready? 306
The Part of Tens 309
Ten Must-Do's for Living with MS 311
Educate Yourself about MS 311
Work with Your Neurologist 312
Start Treatment Early 312
Make MS a Part of the Family 312
Develop Your Support Network 313
Plan for the Future 313
Feel Healthy and Well 313
Create Your Tool Chest 314
Monitor Your Mood 314
Keep Your Sense of Humor Well-Oiled 314
Ten MS Myths Debunked 315
MS is Fatal 315
Everyone Eventually Needs a Wheelchair 315
Because There's No Cure, There's Nothing You Can Do about Your MS 316
People with MS Can't Handle Stress 316
People with MS Shouldn't Have Children 317
"Natural" Treatments Are Safer 317
No One Can Understand How You Feel 317
Having a Relapse Means Your Medication Isn't Working 318
Scientists Aren't Making Any Progress 318
If You Can't Walk, Your Life Is Over 318
Ten Tips for Trouble-Free Travel 319
Tap the Right Resources 319
Calm Your Medical Concerns 320
Save Energy for the Fun Stuff 320
Check Ahead for Accessibility 320
Rent Accessible Vehicles 321
Keep Your Cool 321
Navigate Air Travel with Confidence 321
Safely Pack Your Prescriptions 322
Get Vaccinated 322
Look for Adventure 322
Appendixes 323
Glossary 325
Additional Resources 339
Reading Other Books about MS 339
Finding Helpful Information Online 341
General information sites 342
Assistive technology sites 342
Government sites 343
Organizations and services 343
Chat rooms and bulletin boards 344
Medications Commonly Used in MS 345
Index 349
Subjects