Multiple Sclerosis For Dummies

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Edition: 1st
Format: Paperback
Pub. Date: 2007-02-20
Publisher(s): For Dummies
List Price: $23.09

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Summary

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.

Author Biography

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 60 MSrelated 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.

Table of Contents

Forewordp. xix
Introductionp. 1
About This Bookp. 1
Conventions Used in This Bookp. 2
What You're Not to Readp. 2
Foolish Assumptionsp. 2
How This Book Is Organizedp. 3
When MS Becomes Part of Your Lifep. 3
Taking Charge of Your MSp. 3
Staying Healthy and Feeling Wellp. 4
Managing Lifestyle Issuesp. 4
Creating Your Safety Netsp. 5
The Part of Tensp. 5
Appendixesp. 5
Icons Used in This Bookp. 6
Where to Go from Herep. 6
When MS Becomes Part of Your Lifep. 7
Meeting MS Face to Facep. 9
Introducing the Roles Your Immune and Nervous Systems Play in MSp. 10
The immune system: Your body's frontline defenderp. 10
The nervous system: Your body's CEOp. 10
What happens in MSp. 11
Taking advantage of the body's natural healing processp. 13
Exploring Possible MS Triggersp. 14
Gender cluesp. 14
Ethnic or racial cluesp. 15
Geographical cluesp. 15
Genetic cluesp. 16
Lifestyle cluesp. 16
Understanding Why Your MS is as Unique as Your Fingerprintp. 17
Distinguishing the four disease typesp. 17
Scanning the possible symptomsp. 19
Perusing the MS Treatment Menup. 19
Recognizing How Your MS Affects Your Loved Onesp. 21
Talking about the tough stuffp. 21
Keeping daily life on trackp. 22
Maintaining healthy partnershipsp. 22
Becoming confident parentsp. 22
Minimizing the Impact of MS on Work and Playp. 23
Taking Steps to Protect Your Quality of Lifep. 24
So, What Is it, Doc? Getting a Diagnosisp. 25
Clarifying the Diagnostic Criteriap. 25
Getting Familiar with the Neurologist's Diagnostic Toolsp. 27
Medical historyp. 28
Neurologic examp. 28
Various medical testsp. 30
Identifying a clinically isolated syndromep. 35
Understanding Why the Road to Diagnosis Can Be Full of Twists and Turnsp. 36
You've Been Diagnosed - So What's Next?p. 37
First Things First: Sorting Out Your Feelingsp. 37
Shock: "This can't be happening"p. 38
Denial: "This isn't happening"p. 38
Confusion: "Why me?"p. 39
Anxiety: "What's going to happen to me?"p. 39
Anger: "Why can't you fix what's happening to me?"p. 40
Relief: "Thank goodness - I thought it was something worse!"p. 40
Deciding on the Next Stepsp. 41
Catch your breath before making any major changes or decisionsp. 42
Have a heart-to-heart conversation with your neurologist about treatmentp. 42
Begin talking about MS with the people in your lifep. 42
Make a commitment to your healthp. 44
Facing the Longer-Term Challenges of a Chronic Illnessp. 44
The how-to of healthy grievingp. 45
Living with unpredictabilityp. 47
Making Treatment and Lifestyle Choices That Work for Youp. 50
Minimizing the stress of decision-makingp. 50
Getting the professional help and personal support you needp. 51
Creating Your Healthcare Teamp. 53
Working with Your Physicianp. 53
Finding a neurologist with the qualities you valuep. 54
Establishing a pattern of routine carep. 56
Making the most of your doctor visitsp. 56
Knowing when to call in the MS specialistp. 58
Getting a second opinionp. 59
Rounding Up Other Key Playersp. 60
The nurse for education, guidance, and supportp. 60
The rehabilitation specialists to help you keep on truckin'p. 61
The mental health specialists to help you keep your head on straightp. 63
The general medical doctorsp. 65
Considering Comprehensive MS Treatment Centersp. 65
Taking Charge of Your MSp. 67
Developing Your Management Plan to Take Charge of Your MSp. 69
Using Multiple Strategies to Manage MSp. 69
Modifying the disease coursep. 70
Managing acute relapsesp. 70
Taking charge of your symptomsp. 71
Enhancing function through rehabilitationp. 71
Providing psychosocial supportp. 72
Taking care of your healthp. 72
Tapping Your Creativity and Flexibilityp. 73
Creating Your Own Treatment Templatep. 74
Managing the Disease Course and Treating Relapsesp. 77
Managing the Disease Coursep. 78
Understanding the whys and wherefores of early treatmentp. 78
Getting familiar with the immunomodulatorsp. 79
Turning to immunosuppressantsp. 85
Setting realistic expectations for the DMTsp. 86
A word about primary-progressive MSp. 87
Managing Relapsesp. 88
Defining a relapsep. 88
Treating an acute relapsep. 90
Getting Comfortable with Your Treatment Decisionsp. 93
Managing Fatigue, Walking Problems, Visual Changes, and Tremorp. 95
Foiling Your Fatiguep. 96
Identifying and dealing with the causes of fatiguep. 96
Managing your energy bank to help put your sleepiness to bedp. 101
Envisioning Solutions to Vision Problemsp. 102
Managing visual symptomsp. 102
Exploring longer-term management strategiesp. 106
Getting Around Walking Problemsp. 106
Addressing the sources of the problemp. 106
Using aids to take charge of your mobilityp. 110
Taming Tremorp. 113
Handling Problems with Bladder and Bowel Function, Pain, Sex, and Speech and Swallowingp. 115
Eliminating Elimination Problemsp. 115
Managing your bothersome bladderp. 116
Dealing with your bowel symptomsp. 119
Sizing up Sexual Symptomsp. 122
Identifying the changes you may be experiencingp. 122
Silence isn't golden: Talking is the first stepp. 124
Treating your sexual symptomsp. 126
Sidestepping Sensory Symptoms and Painp. 130
Sorting out Speech and Swallowing Problemsp. 133
Speech and voice problems: Articulating the factsp. 133
Watching out for swallowing problemsp. 134
Getting Your Head around Problems with Thinking and Moodp. 137
Handling Problems with Thinking and Memoryp. 137
Defining cognitionp. 138
Understanding how MS can affect your cognitionp. 138
Deciding when an evaluation is in orderp. 141
Knowing what to expect during an evaluationp. 142
Identifying treatment optionsp. 143
Employing practical strategies for managing daily cognitive challengesp. 144
Managing the Emotional Ups and Downsp. 145
Controlling mood swingsp. 146
Getting a handle on uncontrolled laughing or cryingp. 147
Dealing with severe depressionp. 148
Considering Complementary and Alternative Medicinep. 153
Defining CAMp. 154
Understanding the Allurep. 155
Putting CAM to the Testp. 155
Understanding the role of the FDAp. 156
Sorting out the wheat from the chaffp. 156
Identifying CAM Interventions That May Be Useful in Managing MS Symptomsp. 158
Herbs, vitamins, and other CAM options that go into the bodyp. 158
Exercise, prayer, and other CAM options done independently or in a classp. 160
Acupuncture, massage, and other CAM options performed by a practitionerp. 161
Becoming a Cautious Cam Consumerp. 162
Staying Healthy and Feeling Wellp. 165
Paying Attention to Your Health - It's Not All about MSp. 167
Enhancing Your Wellness by Paying Attention to the Whole Youp. 167
Scheduling Routine Checkups to Protect Your Healthp. 168
Making Healthy Eating a Priorityp. 169
Taking MS into account when planning your menup. 170
Battling the barriers to healthy eatingp. 171
Improving Your MS and Overall Wellness with Exercisep. 172
Overcoming the hurdlesp. 173
Exercising your optionsp. 174
Maximizing your comfort and safety during exercisep. 176
Increasing Your Chances of Successp. 177
Handling Stress without Giving Up Your Lifep. 179
Understanding the Relationship between Stress and MSp. 179
Recognizing Your Own Signs of Stressp. 180
From sweaty palms to pounding hearts: Knowing your physical signs of stressp. 180
Anxiety and irritability: Knowing your emotional signs of stressp. 181
Identifying the Major Stresses in Your Lifep. 182
Dealing with the devil: Job stress 101p. 182
Handling family stress with grace and composurep. 183
Controlling the uncontrollable: Managing your MS stressp. 183
Developing Your Stress Management Planp. 184
Figuring out your prioritiesp. 185
Setting realistic goalsp. 185
Cutting yourself some slackp. 186
Taking some practical stepsp. 186
Tapping available resourcesp. 188
Zoning in on your "MS-free zone"p. 188
Practicing stress management techniquesp. 189
Coping with Advanced MSp. 191
Scouting Out the Treatment Scenep. 191
Understanding your disease-management optionsp. 192
Exploring ways to feel and function at your bestp. 194
Taking steps to prevent unnecessary complicationsp. 195
Maintaining Your Quality of Lifep. 197
Holding on to what's important to youp. 197
Stay in touch: Preserving your connections with other peoplep. 198
Establishing goals and enjoying the satisfaction of meeting themp. 198
Keeping your self-image well-polishedp. 199
Finding your "MS-free zone"p. 199
Helping yourself by helping someone elsep. 200
Discovering Long-Term Care Services (Just In Case)p. 201
Defining long-term carep. 201
Getting help in your homep. 202
Looking into adult day carep. 203
Identifying assisted living optionsp. 204
Considering nursing home carep. 204
Important Tips for Caregiversp. 205
Managing Lifestyle Issuesp. 207
Presenting Your MS Face to the Worldp. 209
Explaining Your MS to Othersp. 209
Providing the basicsp. 210
Dealing with common reactionsp. 211
Remembering that MS is part of you but not all of youp. 214
Disclosing Your Diagnosis to a Prospective Partnerp. 215
Communicating Your Needsp. 218
Giving clear messagesp. 218
Staking out your independencep. 219
P.S. The doctor can't read your mind eitherp. 220
Making MS a Part of the Familyp. 221
Addressing Your Family Members' Feelings about Your Diagnosisp. 221
Communicating Effectively with Adult Family Membersp. 223
Recognizing communication barriersp. 223
Getting the ball rolling toward more open communicationp. 224
Keeping the Family Rhythm Going so Your MS Doesn't Steal the Showp. 227
Coping with the direct and indirect costsp. 228
Managing energy and timep. 228
Establishing family prioritiesp. 230
Problem-solving: Many heads are better than onep. 230
Building and Maintaining Healthy Partner Relationshipsp. 231
Making time for each otherp. 231
Keeping the intimacy alivep. 232
Maintaining a balanced partnershipp. 233
What to do when one partner can't participate in joint activitiesp. 233
Turning a caregiving relationship into a care partnershipp. 234
When Your Child Has MSp. 235
Helping your adult child with MSp. 235
Young children and teens get MS toop. 237
And Baby Makes Three, Four, or More: Planning a Family around Your MSp. 241
MS and Babies: Here's the Good News!p. 241
Fertility isn't affected by MSp. 242
Pregnancy hormones reduce disease activityp. 242
Pregnancies don't increase a woman's long-term disability levelp. 243
Childbirth isn't a piece of cake for anyone but women with MS do just finep. 243
Parents with MS have healthy babiesp. 244
Breastfeeding is definitely an optionp. 244
Considering Key Issues when Making Family-Planning Decisionsp. 245
Minding your medicationsp. 245
Remembering that babies don't stay babies very longp. 246
Facing the uncertainties: The future doesn't come with guaranteesp. 247
Strategies for Smart Decision-Makingp. 247
Consult your MS doctorp. 247
Evaluate your financial situationp. 248
Take a good look at your teamworkp. 248
Check out your support networkp. 249
Have a heart-to-heart with your partnerp. 249
Talk to other parents living with MSp. 249
Remember that your plans can changep. 250
Parenting: It Wasn't Easy Before You Had MS!p. 251
Keeping the Communication Lines Openp. 252
Telling the kids about your MS makes good sensep. 252
Sharing info with your children when secrecy is importantp. 254
Finding ways to broach the big issuesp. 255
Explaining those pesky invisible symptomsp. 256
Parenting around Your MS Symptomsp. 258
"I'm so tired that I'm in bed before they are!"p. 258
"How can I be a good dad if I can't even play ball?"p. 259
"How can I discipline 'em if I can't catch 'em?"p. 261
Employing Effective Parenting Strategiesp. 262
Call a spade a spade: Let MS take the blame when it needs top. 262
Polish up your creativity and flexibilityp. 262
Call on your support networkp. 263
Remember, MS isn't always to blame - other people's teenagers are a pain toop. 263
Handle little problems before they get biggerp. 264
Allow kids to be kidsp. 265
Creating Your Safety Netsp. 267
Keeping Your Place in the Workforcep. 269
Understanding the High Rate of Unemployment in MSp. 269
Counting the Reasons to Keep on Truckin'p. 270
Speed Bumps Ahead: Recognizing the Job-Related Challengesp. 271
When symptoms get in the wayp. 271
When attitudes get in the wayp. 272
Knowing Your Rights under the ADAp. 275
Disclosing your MS in the workplacep. 275
Understanding the terms used in the lawp. 277
Requesting reasonable accommodationsp. 278
Calling in the EEOCp. 279
Thinking about Leaving Your Jobp. 280
Exhausting your short-term leave optionsp. 280
Looking into long-term disability optionsp. 280
Making the choices that are right for youp. 282
Getting a Grip on Insurancep. 283
Considering Your Health Insurance Options - It's All about Eligibilityp. 283
Employment-based insurance programsp. 284
Public health insurance programsp. 284
Self-employment optionsp. 285
Options if you don't have health insurancep. 285
Keeping a Tight Hold on Your Health Insurancep. 286
Continuing coverage with COBRAp. 286
Protecting your coverage with HIPAAp. 289
Seeing COBRA and HIPAA work as a teamp. 290
Understanding the Ins and Outs of Your Health Insurance Planp. 290
Filing Successful Insurance Appealsp. 292
Check your coveragep. 292
Confirm why coverage was denied or was less than expectedp. 292
File an appealp. 293
Replacing Your Income with Disability Insurancep. 293
Commercial disability insurancep. 294
Public disability insurance: SSDIp. 295
A Brief Word about Life and Long-Term Care Insurancep. 296
Planning for a Future with MSp. 297
Preparing for the Worst While Hoping for the Bestp. 297
Facing those scary "what-ifs?"p. 298
Taking charge of your futurep. 298
Navigating the Planning Process: It's as Easy as One, Two, Threep. 300
Where are you now?p. 300
What might the future bring?p. 303
What can you do now to be ready?p. 306
The Part of Tensp. 309
Ten Must-Do's for Living with MSp. 311
Educate Yourself about MSp. 311
Work with Your Neurologistp. 312
Start Treatment Earlyp. 312
Make MS a Part of the Familyp. 312
Develop Your Support Networkp. 313
Plan for the Futurep. 313
Feel Healthy and Wellp. 313
Create Your Tool Chestp. 314
Monitor Your Moodp. 314
Keep Your Sense of Humor Well-Oiledp. 314
Ten MS Myths Debunkedp. 315
MS is Fatalp. 315
Everyone Eventually Needs a Wheelchairp. 315
Because There's No Cure, There's Nothing You Can Do about Your MSp. 316
People with MS Can't Handle Stressp. 316
People with MS Shouldn't Have Childrenp. 317
"Natural" Treatments Are Saferp. 317
No One Can Understand How You Feelp. 317
Having a Relapse Means Your Medication Isn't Workingp. 318
Scientists Aren't Making Any Progressp. 318
If You Can't Walk, Your Life Is Overp. 318
Ten Tips for Trouble-Free Travelp. 319
Tap the Right Resourcesp. 319
Calm Your Medical Concernsp. 320
Save Energy for the Fun Stuffp. 320
Check Ahead for Accessibilityp. 320
Rent Accessible Vehiclesp. 321
Keep Your Coolp. 321
Navigate Air Travel with Confidencep. 321
Safely Pack Your Prescriptionsp. 322
Get Vaccinatedp. 322
Look for Adventurep. 322
Appendixesp. 323
Glossaryp. 325
Additional Resourcesp. 339
Reading Other Books about MSp. 339
Finding Helpful Information Onlinep. 341
General information sitesp. 342
Assistive technology sitesp. 342
Government sitesp. 343
Organizations and servicesp. 343
Chat rooms and bulletin boardsp. 344
Medications Commonly Used in MSp. 345
Indexp. 349
Table of Contents provided by Ingram. All Rights Reserved.

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