Multiple Sclerosis For Dummies [Pehme köide]

Foreword		xix
Introduction		1	(1)
About This Book		1	(1)
Conventions Used in This Book		2	(1)
What You're Not to Read		2	(1)
Foolish Assumptions		2	(1)
How This Book Is Organized		3	(3)
Part I: When MS Becomes Part of Your Life		3	(1)
Part II: Taking Charge of Your MS		3	(1)
Part III: Staying Healthy and Feeling Well		4	(1)
Part IV: Managing Lifestyle Issues		4	(1)
Part V: Creating Your Safety Nets		5	(1)
Part VI: The Part of Tens		5	(1)
Part VII: Appendixes		5	(1)
Icons Used in This Book		6	(1)
Where to Go from Here		6	(1)
Part I: When MS Becomes Part of your Life		7	(60)
Meeting MS Face to Face		9	(16)
Introducing the Roles Your Immune and Nervous Systems Play in MS		10	(4)
The immune system: Your body's frontline defender		10	(1)
The nervous system: Your body's CEO		10	(1)
What happens in MS		11	(2)
Taking advantage of the body's natural healing process		13	(1)
Exploring Possible MS Triggers		14	(3)
Gender clues		14	(1)
Ethnic or racial clues		15	(1)
Geographical clues		15	(1)
Genetic clues		16	(1)
Lifestyle clues		16	(1)
Understanding Why Your MS is as Unique as Your Fingerprint		17	(2)
Distinguishing the four disease types		17	(2)
Scanning the possible symptoms		19	(1)
Perusing the MS Treatment Menu		19	(2)
Recognizing How Your MS Affects Your Loved Ones		21	(2)
Talking about the tough stuff		21	(1)
Keeping daily life on track		22	(1)
Maintaining healthy partnerships		22	(1)
Becoming confident parents		22	(1)
Minimizing the Impact of MS on Work and Play		23	(1)
Taking Steps to Protect Your Quality of Life		24	(1)
So, What Is it, Doc? Getting a Diagnosis		25	(12)
Clarifying the Diagnostic Criteria		25	(2)
Getting Familiar with the Neurologist's Diagnostic Tools		27	(9)
Medical history		28	(1)
Neurologic exam		28	(2)
Various medical tests		30	(5)
Identifying a clinically isolated syndrome		35	(1)
Understanding Why the Road to Diagnosis Can Be Full of Twists and Turns		36	(1)
You've Been Diagnosed - So What's Next?		37	(16)
First Things First: Sorting Out Your Feelings		37	(4)
Shock: ``This can't be happening''		38	(1)
Denial: ``This isn't happening''		38	(1)
Confusion: ``Why me?''		39	(1)
Anxiety: ``What's going to happen to me?''		39	(1)
Anger: ``Why can't you fix what's happening to me?''		40	(1)
Relief: ``Thank goodness - I thought it was something worse!''		40	(1)
Deciding on the Next Steps		41	(3)
Catch your breath before making any major changes or decisions		42	(1)
Have a heart-to-heart conversation with your neurologist about treatment		42	(1)
Begin talking about MS with the people in your life		42	(2)
Make a commitment to your health		44	(1)
Facing the Longer-Term Challenges of a Chronic Illness		44	(6)
The how-to of healthy grieving		45	(2)
Living with unpredictability		47	(3)
Making Treatment and Lifestyle Choices That Work for You		50	(3)
Minimizing the stress of decision-making		50	(1)
Getting the professional help and personal support you need		51	(2)
Creating Your Healthcare Team		53	(14)
Working with Your Physician		53	(7)
Finding a neurologist with the qualities you value		54	(2)
Establishing a pattern of routine care		56	(1)
Making the most of your doctor visits		56	(2)
Knowing when to call in the MS specialist		58	(1)
Getting a second opinion		59	(1)
Rounding Up Other Key Players		60	(5)
The nurse for education, guidance, and support		60	(1)
The rehabilitation specialists to help you keep on truckin'		61	(2)
The mental health specialists to help you keep your head on straight		63	(2)
The general medical doctors		65	(1)
Considering Comprehensive MS Treatment Centers		65	(2)
Part II: Taking Charge of your MS		67	(98)
Developing Your Management Plan to Take Charge of Your MS		69	(8)
Using Multiple Strategies to Manage MS		69	(4)
Modifying the disease course		70	(1)
Managing acute relapses		70	(1)
Taking charge of your symptoms		71	(1)
Enhancing function through rehabilitation		71	(1)
Providing psychosocial support		72	(1)
Taking care of your health		72	(1)
Tapping Your Creativity and Flexibility		73	(1)
Creating Your Own Treatment Template		74	(3)
Managing the Disease Course and Treating Relapses		77	(18)
Managing the Disease Course		78	(10)
Understanding the whys and wherefores of early treatment		78	(1)
Getting familiar with the immunomodulators		79	(6)
Turning to immunosuppressants		85	(1)
Setting realistic expectations for the DMTs		86	(1)
A word about primary-progressive MS		87	(1)
Managing Relapses		88	(5)
Defining a relapse		88	(2)
Treating an acute relapse		90	(3)
Getting Comfortable with Your Treatment Decisions		93	(2)
Managing Fatigue, Walking Problems, Visual Changes, and Tremor		95	(20)
Foiling Your Fatigue		96	(6)
Identifying and dealing with the causes of fatigue		96	(5)
Managing your energy bank to help put your sleepiness to bed		101	(1)
Envisioning Solutions to Vision Problems		102	(4)
Managing visual symptoms		102	(4)
Exploring longer-term management strategies		106	(1)
Getting Around Walking Problems		106	(7)
Addressing the sources of the problem		106	(4)
Using aids to take charge of your mobility		110	(3)
Taming Tremor		113	(2)
Handling Problems with Bladder and Bowel Function, Pain, Sex, and Speech and Swallowing		115	(22)
Eliminating Elimination Problems		115	(7)
Managing your bothersome bladder		116	(3)
Dealing with your bowel symptoms		119	(3)
Sizing up Sexual Symptoms		122	(8)
Identifying the changes you may be experiencing		122	(2)
Silence isn't golden: Talking is the first step		124	(2)
Treating your sexual symptoms		126	(4)
Sidestepping Sensory Symptoms and Pain		130	(3)
Sorting out Speech and Swallowing Problems		133	(4)
Speech and voice problems: Articulating the facts		133	(1)
Watching out for swallowing problems		134	(3)
Getting Your Head around Problems with Thinking and Mood		137	(16)
Handling Problems with Thinking and Memory		137	(8)
Defining cognition		138	(1)
Understanding how MS can affect your cognition		138	(3)
Deciding when an evaluation is in order		141	(1)
Knowing what to expect during an evaluation		142	(1)
Identifying treatment options		143	(1)
Employing practical strategies for managing daily cognitive challenges		144	(1)
Managing the Emotional Ups and Downs		145	(8)
Controlling mood swings		146	(1)
Getting a handle on uncontrolled laughing or crying		147	(1)
Dealing with severe depression		148	(5)
Considering Complementary and Alternative Medicine		153	(3)
Defining CAM		154	(1)
Understanding the Allure		155	(1)
Putting CAM to the Test		155	(1)
Understanding the role of the FDA		156	(9)
Sorting out the wheat from the chaff		156	(2)
Identifying CAM Interventions That May Be Useful in Managing MS Symptoms		158	(1)
Herbs, vitamins, and other CAM options that go into the body		158	(4)
Exercise, prayer, and other CAM options done independently or in a class		160	(1)
Acupuncture, massage, and other CAM options performed by a practitioner		161	(1)
Becoming a Cautious CAM Consumer		162	(3)
Part III: Staying Healthy and Feeling Well		165	(42)
Paying Attention to Your Health - It's Not All about MS		167	(12)
Enhancing Your Wellness by Paying Attention to the Whole You		167	(1)
Scheduling Routine Checkups to Protect Your Health		168	(1)
Making Healthy Eating a Priority		169	(3)
Taking MS into account when planning your menu		170	(1)
Battling the barriers to healthy eating		171	(1)
Improving Your MS and Overall Wellness with Exercise		172	(5)
Overcoming the hurdles		173	(1)
Exercising your options		174	(2)
Maximizing your comfort and safety during exercise		176	(1)
Increasing Your Chances of Success		177	(2)
Handling Stress without Giving Up Your Life		179	(12)
Understanding the Relationship between Stress and MS		179	(1)
Recognizing Your Own Signs of Stress		180	(2)
From sweaty palms to pounding hearts: Knowing your physical signs of stress		180	(1)
Anxiety and irritability: Knowing your emotional signs of stress		181	(1)
Identifying the Major Stresses in Your Life		182	(2)
Dealing with the devil: Job stress 101		182	(1)
Handling family stress with grace and composure		183	(1)
Controlling the uncontrollable: Managing your MS stress		183	(1)
Developing Your Stress Management Plan		184	(7)
Figuring out your priorities		185	(1)
Setting realistic goals		185	(1)
Cutting yourself some slack		186	(1)
Taking some practical steps		186	(2)
Tapping available resources		188	(1)
Zoning in on your ``MS-free zone''		188	(1)
Practicing stress management techniques		189	(2)
Coping with Advanced MS		191	(16)
Scouting Out the Treatment Scene		191	(6)
Understanding your disease-management options		192	(2)
Exploring ways to feel and function at your best		194	(1)
Taking steps to prevent unnecessary complications		195	(2)
Maintaining Your Quality of Life		197	(4)
Holding on to what's important to you		197	(1)
Stay in touch: Preserving your connections with other people		198	(1)
Establishing goals and enjoying the satisfaction of meeting them		198	(1)
Keeping your self-image well-polished		199	(1)
Finding your ``MS-free zone''		199	(1)
Helping yourself by helping someone else		200	(1)
Discovering Long-Term Care Services (Just In Case)		201	(4)
Defining long-term care		201	(1)
Getting help in your home		202	(1)
Looking into adult day care		203	(1)
Identifying assisted living options		204	(1)
Considering nursing home care		204	(1)
Important Tips for Caregivers		205	(2)
Part IV: Managing Lifestyle lssues		207	(60)
Presenting Your MS Face to the World		209	(12)
Explaining Your MS to Others		209	(6)
Providing the basics		210	(1)
Dealing with common reactions		211	(3)
Remembering that MS is part of you but not all of you		214	(1)
Disclosing Your Dlagnosis to a Prospective Partner		215	(3)
Communicating Your Needs		218	(3)
Giving clear messages		218	(1)
Staking out your independence		219	(1)
P.S. The doctor can't read your mind either		220	(1)
Making MS a Part of the Family		221	(20)
Addressing Your Family Members' Feelings about Your Diagnosis		221	(2)
Communicating Effectively with Adult Family Members		223	(4)
Recognizing communication barriers		223	(1)
Getting the ball rolling toward more open communication		224	(3)
Keeping the Family Rhythm Going so Your MS Doesn't Steal the Show		227	(4)
Coping with the direct and indirect costs		228	(1)
Managing energy and time		228	(2)
Establishing lamlly priorities		230	(1)
Problem-solving: Many heads are better than one		230	(1)
Building and Maintaining Healthy Partner Relationships		231	(4)
Making time for each other		231	(1)
Keeping the intimacy alive		232	(1)
Maintaining a balanced partnership		233	(1)
What to do when one partner can't participate in joint activities		233	(1)
Turning a caregiving relationship into a care partnership		234	(1)
When Your Child Has MS		235	(6)
Helping your adult child with MS		235	(2)
Young children and teens get MS too		237	(4)
And Baby Makes Three, Four, or More: Planning a Family around Your MS		241	(10)
MS and Babies: Here's the Good News!		241	(4)
Fertility isn't affected by MS		242	(1)
Pregnancy hormones reduce disease activity		242	(1)
Pregnancies don't increase a woman's long-term disability level		243	(1)
Childbirth isn't a piece of cake for anyone but women with MS do just fine		243	(1)
Parents with MS have healthy bables		244	(1)
Breastfeeding is definitely an option		244	(1)
Considering Key Issues when Making Family-Planning Decisions		245	(2)
Minding your medications		245	(1)
Remembering that babies don't stay babies very long		246	(1)
Facing the uncertainties: The future doesn't come with guarantees		247	(1)
Strategies for Smart Decision-Making		247	(4)
Consult your MS doctor		247	(1)
Evaluate your financial situation		248	(1)
Take a good look at your teamwork		248	(1)
Check out your support network		249	(1)
Have a heart-to-heart with your partner		249	(1)
Talk to other parents living with MS		249	(1)
Remember that your plans can change		250	(1)
Parenting: It Wasn't Easy Before You Had MS!		251	(16)
Keeping the Communication Lines Open		252	(6)
Telling the kids about your MS makes good sense		252	(2)
Sharing info with your children when secrecy is important		254	(1)
Finding ways to broach the big issues		255	(1)
Explaining those pesky invisible symptoms		256	(2)
Parenting around Your MS Symptoms		258	(4)
``I'm so tired that I'm in bed before they are!''		258	(1)
``How can I be a good dad if I can't even play ball?''		259	(2)
``How can I discipline `em if I can't catch `em?''		261	(1)
Employing Effective Parenting Strategies		262	(5)
Call a spade a spade: Let MS take the blame when it needs to		262	(1)
Polish up your creativity and flexibility		262	(1)
Call on your support network		263	(1)
Remember, MS isn't always to blame --- other people's teenagers are a pain too		263	(1)
Handle little problems before they get bigger		264	(1)
Allow kids to be kids		265	(2)
Part V: Creating Your Safety Nets		267	(42)
Keeping Your Place in the Workforce		269	(14)
Understanding the High Rate of Unemployment in MS		269	(1)
Counting the Reasons to Keep on Truckin'		270	(1)
Speed Bumps Ahead: Recognizing the Job-Related Challenges		271	(4)
When symptoms get in the way		271	(1)
When attitudes get in the way		272	(3)
Knowing Your Rights under the ADA		275	(5)
Disclosing your MS in the workplace		275	(2)
Understanding the terms used in the law		277	(1)
Requesting reasonable accommodations		278	(1)
Calling in the EEOC		279	(1)
Thinking about Leaving Your Job		280	(3)
Exhausting your short-term leave options		280	(1)
Looking into long-term disability options		280	(2)
Making the choices that are right for you		282	(1)
Getting a Grip on Insurance		283	(14)
Considering Your Health Insurance Options --- It's All about Eligibility		283	(3)
Employment-based insurance programs		284	(1)
Public health insurance programs		284	(1)
Self-employment options		285	(1)
Options if you don't have health insurance		285	(1)
Keeping a Tight Hold on Your Health Insurance		286	(4)
Continuing coverage with COBRA		286	(3)
Protecting your coverage with HIPAA		289	(1)
Seeing COBRA and HIPAA work as a team		290	(1)
Understanding the Ins and Outs of Your Health Insurance Plan		290	(2)
Filing Successful Insurance Appeals		292	(1)
Step 1: Check your coverage		292	(1)
Step 2: Confirm why coverage was denied or was less than expected		292	(1)
Step 3: File an appeal		293	(1)
Replacing Your Income with Disability Insurance		293	(3)
Commercial disability insurance		294	(1)
Public disability insurance: SSDI		295	(1)
A Brief Word about Life and Long-Term Care Insurance		296	(1)
Planning for a Future with MS		297	(12)
Preparing for the Worst While Hoping for the Best		297	(3)
Facing those scary ``what-ifs?''		298	(1)
Taking charge of your future		298	(2)
Navigating the Planning Process: It's as Easy as One, Two, Three		300	(9)
Where are you now?		300	(3)
What might the future bring?		303	(3)
What can you do now to be ready?		306	(3)
Part VI: The Part of Tens		309	(14)
Ten Must-Do's for Living with MS		311	(4)
Educate Yourself about MS		311	(1)
Work with Your Neurologist		312	(1)
Start Treatment Early		312	(1)
Make MS a Part of the Family		312	(1)
Develop Your Support Network		313	(1)
Plan for the Future		313	(1)
Feel Healthy and Well		313	(1)
Create Your Tool Chest		314	(1)
Monitor Your Mood		314	(1)
Keep Your Sense of Humor Well-Oiled		314	(1)
Ten MS Myths Debunked		315	(4)
MS is Fatal		315	(1)
Everyone Eventually Needs a Wheelchair		315	(1)
Because There's No Cure, There's Nothing You Can Do about Your MS		316	(1)
People with MS Can't Handle Stress		316	(1)
People with MS Shouldn't Have Children		317	(1)
``Natural'' Treatments Are Safer		317	(1)
No One Can Understand How You Feel		317	(1)
Having a Relapse Means Your Medication Isn't Working		318	(1)
Scientists Aren't Making Any Progress		318	(1)
If You Can't Walk, Your Life Is Over		318	(1)
Ten Tips for Trouble-Free Travel		319	(4)
Tap the Right Resources		319	(1)
Calm Your Medical Concerns		320	(1)
Save Energy for the Fun Stuff		320	(1)
Check Ahead for Accessibility		320	(1)
Rent Accessible Vehicles		321	(1)
Keep Your Cool		321	(1)
Navigate Air Travel with Confidence		321	(1)
Safely Pack Your Prescriptions		322	(1)
Get Vaccinated		322	(1)
Look for Adventure		322	(1)
Part VII: Appendixes		323	(2)
Appendix A: Glossary		325	(14)
Appendix B: Additional Resources		339	(6)
Reading Other Books about MS		339	(2)
Finding Helpful Information Online		341	(4)
General information sites		342	(1)
Assistive technology sites		342	(1)
Government sites		343	(1)
Organizations and services		343	(1)
Chat rooms and bulletin boards		344	(1)
Appendix C: Medications Commonly Used in MS		345	(4)
Index		349

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.