| Foreword |
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xxi | |
| Introduction |
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1 | (6) |
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1 | (1) |
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Conventions Used in This Book |
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2 | (1) |
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2 | (1) |
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2 | (1) |
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How This Book Is Organized |
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3 | (2) |
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Part I When MS Becomes Part of Your Life |
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3 | (1) |
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Part II Taking Charge of Your MS |
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3 | (1) |
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Part III Staying Healthy and Feeling Well |
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4 | (1) |
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Part IV Managing Lifestyle Issues |
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4 | (1) |
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Part V Creating Your Safety Nets |
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5 | (1) |
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5 | (1) |
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5 | (1) |
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6 | (1) |
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Part I When MS Becomes Part of Your Life |
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7 | (60) |
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Chapter 1 Meeting MS Face to Face |
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9 | (16) |
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Introducing the Roles Your Immune and Nervous Systems Play in MS |
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10 | (4) |
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The immune system: Your body's frontline defender |
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10 | (1) |
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The nervous system: Your body's CEO |
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10 | (1) |
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11 | (2) |
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Taking advantage of the body's natural healing process |
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13 | (1) |
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Exploring Possible MS Triggers |
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14 | (3) |
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14 | (1) |
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15 | (1) |
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15 | (1) |
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16 | (1) |
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16 | (1) |
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Understanding Why Your MS Is as Unique as Your Fingerprint |
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17 | (2) |
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Distinguishing the four disease courses |
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17 | (2) |
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Scanning the possible symptoms |
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19 | (1) |
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Reviewing the MS Treatment Menu |
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19 | (2) |
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Recognizing How Your MS Affects Your Loved Ones |
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21 | (4) |
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Talking about the tough stuff |
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21 | (1) |
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Keeping daily life on track |
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21 | (1) |
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Maintaining healthy partnerships |
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22 | (1) |
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Becoming confident parents |
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22 | (1) |
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Minimizing the Impact of MS on Work and Play |
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23 | (1) |
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Protecting Your Quality of Life |
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23 | (2) |
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Chapter 2 So, Doc, What Do I Have? Getting a Diagnosis |
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25 | (12) |
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Clarifying the Diagnostic Criteria |
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25 | (2) |
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Getting Familiar with the Neurologist's Diagnostic Tools |
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27 | (9) |
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28 | (1) |
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28 | (2) |
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30 | (5) |
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Identifying a clinically isolated syndrome |
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35 | (1) |
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Understanding Why the Road to Diagnosis Can Have Detours |
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36 | (1) |
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Chapter 3 You Have MS -- So Now What? |
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37 | (16) |
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First Things First: Sorting Out Your Feelings |
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37 | (3) |
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Shock: "What just hit me?" |
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38 | (1) |
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Denial: "This isn't happening" |
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38 | (1) |
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39 | (1) |
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Anxiety: "What's going to happen to me?" |
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39 | (1) |
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Anger: "This just isn't fair!" |
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39 | (1) |
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Relief: "Finally! Now I know what's up!" |
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40 | (1) |
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Deciding on the Next Steps |
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40 | (3) |
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Catch your breath before making any major changes or decisions |
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40 | (1) |
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Have a heart-to-heart conversation with your neurologist about treatment |
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41 | (1) |
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Begin talking about MS with the people in your life |
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41 | (2) |
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Make a commitment to your health |
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43 | (1) |
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Facing the Longer-Term Challenges of a Chronic Illness |
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43 | (5) |
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The how-to of healthy grieving |
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43 | (2) |
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Living with unpredictability |
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45 | (3) |
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Making Treatment and Lifestyle Choices That Work for You |
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48 | (5) |
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Minimizing the stress of decision-making |
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49 | (1) |
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Getting the professional help you need |
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49 | (1) |
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Reaching out for emotional support |
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50 | (3) |
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Chapter 4 Getting the Right Players on Your Healthcare Team |
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53 | (14) |
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Working with Your Physician |
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53 | (7) |
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Finding a neurologist with the qualities you value |
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54 | (2) |
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Establishing a pattern of routine care |
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56 | (1) |
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Making the most of your doctor visits |
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57 | (1) |
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Knowing when to call in the MS specialist |
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58 | (2) |
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60 | (1) |
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Rounding Up Other Key Players |
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60 | (5) |
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The nurse for education, guidance, and support |
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61 | (1) |
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The rehabilitation specialists to help you keep on truckin' |
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61 | (2) |
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The mental health specialists to help you keep your head on straight |
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63 | (2) |
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Other important specialists |
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65 | (1) |
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Considering Comprehensive MS Treatment Centers |
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65 | (2) |
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Part II Taking Charge of Your MS |
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67 | (104) |
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Chapter 5 Developing a Plan to Take Charge of Your MS |
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69 | (8) |
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Using Multiple Strategies to Manage MS |
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69 | (4) |
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Modifying the disease course |
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70 | (1) |
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70 | (1) |
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Taking charge of your symptoms |
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71 | (1) |
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Enhancing function through rehabilitation |
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71 | (1) |
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Engaging psychosocial support |
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72 | (1) |
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Taking care of your health |
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73 | (1) |
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Tapping Your Creativity and Flexibility |
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73 | (1) |
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Creating Your Own Treatment Template |
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74 | (3) |
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Chapter 6 Managing the Disease Course and Treating Relapses |
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77 | (22) |
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Managing the Disease Course |
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78 | (14) |
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Understanding the whys and wherefores of early treatment |
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78 | (1) |
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Getting to know the first-line options |
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79 | (5) |
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Turning to the Plan B options |
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84 | (5) |
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Setting realistic expectations for the DMTs |
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89 | (1) |
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Carefully considering benefits and risks |
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90 | (1) |
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A word about progressive forms of MS |
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91 | (1) |
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92 | (6) |
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93 | (1) |
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Treating an acute relapse |
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94 | (4) |
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Feeling Confident about Your Treatment Decisions |
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98 | (1) |
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Chapter 7 Managing Fatigue, Walking Problems, Visual Changes, and Tremor |
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99 | (20) |
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100 | (5) |
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Identifying and dealing with the causes of fatigue |
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100 | (4) |
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Managing your energy bank to help put your sleepiness to bed |
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104 | (1) |
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Envisioning Solutions to Vision Problems |
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105 | (5) |
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106 | (3) |
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Exploring longer-term management strategies |
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109 | (1) |
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Getting Around Walking Problems |
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110 | (6) |
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Addressing the sources of the problem |
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110 | (4) |
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Using medication to improve walking |
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114 | (1) |
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Using aids to take charge of your mobility |
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114 | (2) |
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116 | (3) |
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Chapter 8 Handling Problems with Bladder and Bowel Function, Pain, Speech and Swallowing, and Sex |
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119 | (22) |
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Eliminating Elimination Problems |
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119 | (7) |
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Managing your bothersome bladder |
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120 | (4) |
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Dealing with your bowel symptoms |
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124 | (2) |
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Sidestepping Sensory Symptoms and Pain |
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126 | (3) |
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Sorting Out Speech and Swallowing Problems |
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129 | (3) |
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Speech and voice problems: Articulating the facts |
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130 | (1) |
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Watching out for swallowing problems |
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131 | (1) |
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Sizing Up Sexual Symptoms |
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132 | (9) |
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Identifying the changes you may be experiencing |
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132 | (2) |
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Silence isn't golden: Talking is the first step |
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134 | (2) |
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Treating your sexual symptoms |
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136 | (5) |
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Chapter 9 Getting Your Head around Problems with Mood and Thinking |
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141 | (16) |
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Managing the Emotional Ups and Downs |
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141 | (8) |
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142 | (4) |
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Controlling moodiness and irritability |
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146 | (2) |
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Getting a handle on uncontrollable laughing or crying |
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148 | (1) |
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Handling Problems with Thinking and Memory |
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149 | (8) |
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149 | (1) |
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Understanding how MS can affect your cognition |
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150 | (3) |
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Deciding when an evaluation is in order |
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153 | (1) |
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Knowing what to expect during an evaluation |
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153 | (1) |
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Identifying treatment options |
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154 | (2) |
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Employing practical strategies for managing daily cognitive challenges |
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156 | (1) |
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Chapter 10 Considering Complementary and Alternative Medicine |
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157 | (14) |
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158 | (1) |
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159 | (1) |
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159 | (3) |
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Understanding the role of the FDA |
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160 | (1) |
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Sorting out the wheat from the chaff |
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160 | (2) |
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Identifying CAM Interventions That May Be Useful in Managing Symptoms |
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162 | (5) |
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Herbs, vitamins, and other CAM options that go into the body |
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162 | (2) |
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Exercise, prayer, and other CAM options done independently or in a class |
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164 | (1) |
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Acupuncture, massage, and other CAM options performed by a practitioner |
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165 | (2) |
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Looking at Chronic Cerebrospinal Venous Insufficiency (CCSVI) |
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167 | (1) |
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Understanding the CCSVI firestorm |
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167 | (1) |
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Ongoing efforts to clarify the relationship between CCSVI and MS |
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168 | (1) |
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Recommendations from the MS experts |
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168 | (1) |
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Becoming a Cautious CAM Consumer |
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168 | (3) |
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Part III Staying Healthy and Feeling Well |
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171 | (42) |
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Chapter 11 Paying Attention to Your Health -- It's Not All about MS |
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173 | (12) |
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Enhancing Your Wellness by Paying Attention to the Whole You |
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174 | (1) |
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Scheduling Routine Checkups to Protect Your Health |
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175 | (1) |
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Making Healthy Eating a Priority |
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176 | (3) |
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Taking MS into account when planning your menu |
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176 | (2) |
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Battling the barriers to healthy eating |
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178 | (1) |
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Improving Your MS and Overall Wellness with Exercise |
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179 | (5) |
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179 | (2) |
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181 | (1) |
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Maximizing your comfort and safety during exercise |
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182 | (2) |
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Increasing Your Chances of Success |
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184 | (1) |
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Chapter 12 Handling Stress without Giving Up Your Life |
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185 | (12) |
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Understanding the Relationship between Stress and MS |
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185 | (1) |
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Recognizing Your Own Signs of Stress |
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186 | (2) |
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Feeling the physical signs of stress |
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186 | (1) |
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Feeling the emotional signs of stress |
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187 | (1) |
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Identifying Your Major Stresses |
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188 | (2) |
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Dealing with stress on the job |
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188 | (1) |
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Handling family stress with composure |
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189 | (1) |
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189 | (1) |
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Creating Your Stress Management Plan |
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190 | (7) |
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Figuring out your priorities |
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191 | (1) |
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191 | (1) |
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Cutting yourself some slack |
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192 | (1) |
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Taking some practical steps |
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192 | (2) |
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Tapping available resources |
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194 | (1) |
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Zoning in on your "MS-free zone" |
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194 | (1) |
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Practicing stress management techniques |
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195 | (2) |
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Chapter 13 Coping with Progressive Forms of MS |
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197 | (16) |
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Scouting Out the Treatment Scene |
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198 | (5) |
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Understanding your treatment options |
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198 | (2) |
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Exploring ways to feel and function at your best |
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200 | (1) |
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Taking steps to prevent unnecessary complications |
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201 | (2) |
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Maintaining Your Quality of Life |
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203 | (4) |
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Holding on to what's important to you |
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203 | (1) |
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Staying connected with other people |
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204 | (1) |
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Establishing goals and enjoying the satisfaction of meeting them |
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205 | (1) |
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Keeping your self-image well-polished |
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205 | (1) |
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Finding your "MS-free zone" |
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206 | (1) |
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Helping yourself by helping someone else |
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206 | (1) |
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Discovering Long-Term Care Services (Just in Case) |
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207 | (4) |
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208 | (1) |
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Getting help in your home |
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208 | (1) |
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Looking into adult day care |
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209 | (1) |
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Identifying assisted-living options |
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210 | (1) |
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Considering nursing home care |
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210 | (1) |
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Important Tips for Care Partners |
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211 | (2) |
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Part IV Managing Lifestyle Issues |
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213 | (60) |
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Chapter 14 Presenting Your MS Face to the World |
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215 | (12) |
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Explaining Your MS to Others |
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215 | (6) |
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216 | (1) |
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Dealing with common reactions |
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217 | (4) |
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Remembering that MS is part of you but not all of you |
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221 | (1) |
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Disclosing Your Diagnosis to a Prospective Partner |
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221 | (3) |
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224 | (3) |
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224 | (1) |
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Staking out your independence |
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224 | (1) |
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P.S. Doctors can't read your mind either |
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225 | (2) |
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Chapter 15 Making MS a Part of the Family |
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227 | (20) |
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Addressing Your Family Members' Feelings about Your Diagnosis |
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227 | (2) |
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Communicating Effectively with Adult Family Members |
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229 | (4) |
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Recognizing communication barriers |
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229 | (1) |
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Getting the ball rolling toward more open communication |
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230 | (3) |
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Keeping the Family Rhythm Going so Your MS Doesn't Steal the Show |
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233 | (3) |
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Coping with the direct and indirect costs |
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234 | (1) |
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234 | (1) |
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Establishing family priorities |
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235 | (1) |
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Problem-solving: Many heads are better than one |
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236 | (1) |
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Building and Maintaining Healthy Partner Relationships |
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236 | (5) |
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Making time for each other |
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237 | (1) |
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Keeping the intimacy alive |
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237 | (1) |
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Maintaining a balanced partnership |
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238 | (1) |
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What to do when one partner can't participate in joint activities |
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239 | (1) |
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Turning a caregiving relationship into a care partnership |
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240 | (1) |
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241 | (6) |
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Helping your adult child with MS |
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241 | (2) |
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Young children and teens get MS too |
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243 | (4) |
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Chapter 16 And Baby Makes Three, Four, or More: Planning a Family around Your MS |
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247 | (10) |
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MS and Babies: Here's the Good News! |
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247 | (4) |
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Fertility isn't affected by MS |
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248 | (1) |
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Pregnancy hormones reduce disease activity |
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248 | (1) |
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Pregnancies don't increase a woman's long-term disability level |
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249 | (1) |
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Childbirth isn't a piece of cake for anyone but women with MS do just fine |
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249 | (1) |
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Parents with MS have healthy babies |
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250 | (1) |
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Breastfeeding is definitely an option |
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250 | (1) |
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Considering Key Issues when Making Family-Planning Decisions |
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251 | (3) |
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251 | (2) |
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Remembering that babies don't stay babies very long |
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253 | (1) |
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Facing the uncertainties: The future doesn't come with guarantees |
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253 | (1) |
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Strategies for Smart Decision-Making |
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254 | (3) |
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254 | (1) |
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Evaluate your financial situation |
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254 | (1) |
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Take a good look at your teamwork |
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255 | (1) |
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Check out your support network |
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255 | (1) |
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Have a heart-to-heart with your partner |
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255 | (1) |
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Talk to other parents living with MS |
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256 | (1) |
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Remember that your plans can change |
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256 | (1) |
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Chapter 17 Parenting: It Wasn't Easy Before You Had MS! |
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257 | (16) |
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Keeping the Communication Lines Open |
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258 | (6) |
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Telling the kids about your MS makes good sense |
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258 | (3) |
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Finding ways to broach the big issues |
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261 | (1) |
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Explaining those pesky symptoms |
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262 | (2) |
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Parenting around Your MS Symptoms |
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264 | (4) |
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"I'm so tired; I'm in bed before they are!" |
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264 | (1) |
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"How can I be a good dad if I can't even play ball?" |
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265 | (2) |
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"How can I discipline -- if I can't catch 'em?" |
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267 | (1) |
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Employing Effective Parenting Strategies |
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268 | (5) |
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Call a spade a spade: Let MS take the blame when it needs to |
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268 | (1) |
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Come up with a creative backup plan |
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268 | (1) |
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Call on your support network |
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269 | (1) |
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Remember, MS isn't always to blame -- other people's teenagers are a pain too |
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269 | (1) |
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Handle little issues before they get bigger |
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270 | (1) |
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271 | (2) |
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Part V Creating Your Safety Nets |
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273 | (42) |
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Chapter 18 Keeping Your Place in the Workforce |
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275 | (14) |
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Understanding the High Rate of Unemployment in MS |
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275 | (1) |
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Counting the Reasons to Keep on Truckin' |
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276 | (1) |
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Speed Bumps Ahead: Recognizing the Job-Related Challenges |
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277 | (3) |
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When symptoms get in the way |
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277 | (1) |
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When attitudes get in the way |
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278 | (2) |
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Knowing Your Rights under the ADA |
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280 | (6) |
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Disclosing your MS in the workplace |
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280 | (3) |
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Understanding the terms used in the law |
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283 | (1) |
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Requesting reasonable accommodations |
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284 | (1) |
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285 | (1) |
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Thinking about Leaving Your Job |
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286 | (3) |
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Exhausting your short-term leave options |
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286 | (1) |
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Looking into long-term disability options |
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287 | (1) |
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Making the choices that are right for you |
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288 | (1) |
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Chapter 19 Getting a Grip on Insurance |
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289 | (14) |
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Considering Your Health Insurance Options -- It's All about Eligibility |
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289 | (3) |
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Employment-based insurance programs |
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290 | (1) |
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Public health insurance programs |
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290 | (1) |
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Insurance plans for the self-employed |
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291 | (1) |
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Options if you don't have health insurance |
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292 | (1) |
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Holding on to Your Health Insurance |
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292 | (4) |
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Continuing coverage with COBRA |
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292 | (2) |
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Protecting your coverage with HIPAA |
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294 | (1) |
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Seeing COBRA and HIPAA work as a team |
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295 | (1) |
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Understanding the Ins and Outs of Your Health Insurance Plan |
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296 | (2) |
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Filing Successful Insurance Appeals |
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298 | (1) |
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Step 1 Check your coverage |
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298 | (1) |
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Step 2 Confirm why coverage was denied or was less than expected |
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298 | (1) |
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298 | (1) |
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Replacing Your Income with Disability Insurance |
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299 | (3) |
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Commercial disability insurance |
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300 | (1) |
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Public disability insurance: SSDI |
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301 | (1) |
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A Brief Word about Life and Long-Term Care Insurance |
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302 | (1) |
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Chapter 20 Planning for a Future with MS |
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303 | (12) |
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Preparing for the Worst While Hoping for the Best |
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303 | (3) |
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Facing those scary "what-ifs?" |
|
|
304 | (1) |
|
Taking charge of your future |
|
|
304 | (2) |
|
Navigating the Planning Process: It's as Easy as One, Two, Three |
|
|
306 | (9) |
|
|
|
306 | (3) |
|
What might the future bring? |
|
|
309 | (3) |
|
What can you do now to be ready? |
|
|
312 | (3) |
|
|
|
315 | (14) |
|
Chapter 21 Ten MS Myths Debunked |
|
|
317 | (4) |
|
|
|
317 | (1) |
|
Everyone Eventually Needs a Wheelchair |
|
|
317 | (1) |
|
Because There's No Cure, There's Nothing You Can Do about Your MS |
|
|
318 | (1) |
|
People with MS Can't Handle Stress |
|
|
318 | (1) |
|
People with MS Shouldn't Have Children |
|
|
319 | (1) |
|
Having a Relapse Means Your Medication Isn't Working |
|
|
319 | (1) |
|
"Natural" Treatments Are Safer |
|
|
319 | (1) |
|
No One Can Understand How You Feel |
|
|
320 | (1) |
|
Scientists Aren't Making Any Progress |
|
|
320 | (1) |
|
If You Can't Walk, Your Life Is Over |
|
|
320 | (1) |
|
Chapter 22 Ten Questions about Exciting Leads in MS Research |
|
|
321 | (4) |
|
Can Vitamin D Help Prevent MS? |
|
|
321 | (1) |
|
How Many Genes Play a Role in MS? |
|
|
322 | (1) |
|
What Medications Are on the Horizon? |
|
|
322 | (1) |
|
Could Worms Become an MS Treatment? |
|
|
322 | (1) |
|
Can Exercise Improve Your Memory? |
|
|
323 | (1) |
|
Can the Nervous System be Repaired? |
|
|
323 | (1) |
|
Could Brain Tissue Loss Alter Mood? |
|
|
323 | (1) |
|
What Might MS in Children Tell Researchers about the Cause(s) of MS? |
|
|
324 | (1) |
|
Can a Brain Damaged by MS Rewire Itself to Compensate for the Loss? |
|
|
324 | (1) |
|
What Does the Future Hold? |
|
|
324 | (1) |
|
Chapter 23 Ten Tips for Trouble-Free Travel |
|
|
325 | (4) |
|
|
|
325 | (1) |
|
Calm Your Medical Concerns |
|
|
326 | (1) |
|
Save Energy for the Fun Stuff |
|
|
326 | (1) |
|
Check Ahead for Accessibility |
|
|
326 | (1) |
|
|
|
327 | (1) |
|
|
|
327 | (1) |
|
Navigate Air Travel with Confidence |
|
|
327 | (1) |
|
Safely Pack Your Prescriptions |
|
|
328 | (1) |
|
|
|
328 | (1) |
|
|
|
328 | (1) |
| Glossary |
|
329 | (14) |
| Index |
|
343 | |
