Parkinson's Disease For Dummies

A user-friendly guide to coping with the daily issues of Parkinson’s If you or someone you love has been diagnosed with Parkinson’s Disease you’re probably wrestling with fear, despair, and countless questions about the future. It’s brighter than you think. In Parkinson’s Disease for Dummies, you’ll discover how to keep a positive attitude and lead an active, productive life as this user-friendly, guide pilots you through the important steps toward taking charge of your condition. It helps you: Make sure you have an accurate diagnosis Assemble and work with your health care team Inform others about your condition Choose the most effective medications Establish a diet and exercise regimen Consider surgical options, alternative therapies, and clinical trials Maintain healthy personal and professional relationships Adjust your routine as your PD progresses This one-stop resource provides proven coping skills, first-hand advice, and practical tools, such as worksheets to assess care options, questions to ask doctors, and current listings of care providers.

Table of Contents:
Foreword xix Introduction 1 About This Book 1 Conventions Used in This Book 2 Foolish Assumptions 3 How This Book Is Organized 3 Part I: Understanding PD 4 Part II: Making PD Part — But Not All — of Your Life 4 Part III: Crafting a Treatment Plan Just for You 4 Part IV: Living Well with PD 5 Part V: Coping with Advanced PD 5 Part VI: The Part of Tens 5 Part VII: Appendixes 5 Icons Used in This Book 6 Where to Go from Here 6 Part I: Understanding PD 7 Chapter 1: Parkinson’s Disease: The Big Picture 9 Defining Parkinson’s — A Movement Disorder 10 Accepting the chronic progressive factors 11 Distinguishing between Parkinson’s disease and related conditions 12 Debunking some commonly held myths about PD 13 Recognizing symptoms that raise questions 14 Seeking the Care You Need 14 From medical professionals 14 From loved ones 15 As your PD progresses 15 Treating Parkinson’s — Previewing Your Options 15 Starting the Course, Staying the Course 16 Dealing with the here and now 16 Working, playing, and having a life 18 Making plans for your future 18 Chapter 2: Considering Possible Causes and Risk Factors 19 Considering Theories on Causes 19 Taking a close look at environmental factors 20 Looking at possible genetic factors 22 Checking out other possible causes 23 Weighing Your Risk Factors 26 Considering your age and gender 26 Taking a look at ethnicity 27 Regarding other risk possibilities 27 Changing Don’t Know to Know 29 The need-to-know info 29 The attitude that busts research barriers 29 Chapter 3: Sizing Up Symptoms, Signs, and Stages 31 Familiarizing Yourself with the Lingo 31 Symptoms — What You Look for 32 Signs — What Your Doctor Looks for 33 Four primary signs 33 Secondary signs and symptoms 35 Non-motor signs and symptoms 36 Stages — Understanding the Unique Path PD Can Take 38 Early stage PD: When life can be fairly normal 39 Moderate stage PD: When you need to accept help 39 Late stage PD: When planning keeps you in control 40 A Few Words for You and Your Care Partner 41 Part II: Making PD Part — But Not All — of Your Life 43 Chapter 4: Getting an Accurate Diagnosis 45 Bringing Up the Subject with Your Doctor 45 Scheduling an appointment 46 Preparing for your initial exam 46 Stepping through your initial exam 48 Leaving with the answers you need 49 If It Looks Like PD…Connecting with a Neurologist 50 Locating an experienced and qualified neurologist 51 Evaluating your neurologist 52 Preparing for that first visit 54 Interviewing the good doctor 54 Reviewing your first impressions 55 Moving forward if it’s a good fit 56 Working with Your Neurologist to Determine Whether This Is PD 56 Navigating the clinical exam 57 Establishing the severity and staging the progression of your PD 58 Ruling out the red herrings: What else can it be? 60 Parkinsonism, But Not PD 61 This Is Your Life — Getting a Second (or Even Third) Opinion 62 Chapter 5: You’ve Been Diagnosed — Now What? 63 Sorting Out Your Emotions 64 Dodging denial and meeting your diagnosis head on 65 Allowing yourself to get angry 65 Admitting you’re scared 66 Getting to acceptance 67 Taking charge and moving forward 68 Taking Action 69 Arming yourself with good information 70 Jotting down the questions you have 71 Establishing realistic and attainable goals 72 Living your life to the fullest 74 Next steps 75 A Word for the PD Care Partner 76 Chapter 6: Drafting Your Healthcare Team and a Game Plan 77 Introducing Your Teammates 77 Lining up the doctors 78 Calling up the therapists 79 Drafting other team players 80 Making the cut 82 Working with Your Team to Manage the Unexpected 82 Establishing an emergency plan 83 The hospital stay and its aftermath 85 More tips for managing the unexpected 87 A Word for the PD Care Partner 88 Chapter 7: Choosing How and When to Share Your News 89 Before You Start Spreading the News 90 Establishing your ground rules 90 Preparing to state your needs 90 Meeting the challenge with good humor 91 Breaking the News to Your Care Partner 92 Telling Your Family 93 Give adults the facts 93 Set a positive tone 94 Don’t sugarcoat the situation for kids 95 Giving Close Friends the News 96 Widening the Circle: Informing Others 97 Handling Sticky Conversations 98 Chapter 8: Special Advice for Those with Young Onset Parkinson’s Disease 99 Comparing YOPD to Traditional Onset PD 100 How they’re the same 100 How they differ 100 Faster or slower? What’s the prognosis? 101 Facing the Special Challenges of YOPD 101 Getting an accurate diagnosis 102 Handling the diagnosis: A positive attitude is the best offense 103 And the best defense is a good offense 104 Staying on track in your career 105 Dealing with PD’s impact on relationships 106 The Dollars and Cents of YOPD Financial Planning 110 A Word for the PD Care Partner 112 Part III: Crafting a Treatment Plan Just for You 113 Chapter 9: Managing PD Symptoms with Prescription Medicines 115 Managing Motor Symptoms with Proven Prescription Medication 115 L-dopa — The gold standard 116 Carbidopa — L-dopa’s companion 116 Entacapone — Another bodyguard for L-dopa 117 Other effective prescription medicines 118 Keeping the names straight 120 Treating Non-Motor PD Symptoms 121 Using Your Medication Safely and Effectively 122 Partnering with your doctor and pharmacist 122 Mixing prescription and OTC medications 124 Setting up a routine for managing your meds 124 Tracking the on-off fluctuations of your meds 126 Chapter 10: When Surgery Is an Option 127 Deciding Whether You’re a Candidate for Surgery 127 Weighing Your Surgical Options 128 Deep brain stimulation (DBS) 128 Lesion procedures 130 Gamma knife surgery 130 Looking to the future: Surgical possibilities 130 Undergoing Deep Brain Stimulation 131 Asking the right questions before DBS 132 Passing the presurgical tests 132 Ironing out the details 133 Knowing what to expect during and after surgery 133 Programming DBS into Your Life 135 Changes you can expect 135 Warning signs you need to heed 135 Chapter 11: Considering Complementary and Alternative Medicine Therapies 137 What’s in a Name? CAM Therapies Defined 137 Introducing Your Options 139 East treats West: Acupuncture and other traditional Chinese medicine 140 Ohhh! Ahhh! Experiencing body-based CAM therapies 140 Exploring mind and body options to relieve tension, stress, and anxiety 141 Staying active via alternative exercise 143 Delving into dietary, protein, enzyme, and vitamin options 144 Finding the Best Practitioner 147 Considering Your Approach to Life: It Too Can Help…or Hinder 148 The therapeutic power of positive thinking 148 Laughter — Still the best medicine 149 Open up to life — Physically, mentally, and spiritually 149 Chapter 12: The Key Roles of Diet and Exercise 151 The Joy of Good Food — Diet and Nutrition 151 Balance is the key 152 Banishing the bad and embracing the good-for-you foods 152 Food as celebration 154 Use It or Lose It — The Healing Power of Exercise and Activity 154 A stretching program to enhance flexibility 155 A strengthening program to build muscle and stabilize joints 168 Other exercise programs that can help 177 Beyond a Structured Exercise Program — PD and Physical Activity 177 Enjoying recreation 178 Keeping up with routine roles and activities 178 Exercises for the Mind and Spirit 179 Choices for the person with PD 180 Choices for the PD care partner 181 Chapter 13: Combating Anxiety and Depression 183 Recognizing the Mental Downside to PD 183 Anxiety is normal — to a point 184 Depression — More than just sad and blue 186 Dealing with apathy and lack of motivation 187 Finding and Accepting Help 188 Taking medication may help 188 Seeking a professional counsellor 189 Sharing the emotional journey with a support group 190 Making lifestyle changes to improve your point of view 192 Don’t worry — Be happy 193 Tapping into the power of positive thinking 195 A Word for the PD Care Partner 196 Don’t forget to take care of you 196 Positive steps you can take 197 Chapter 14: Clinical Trials and Your Role in the Search for a Cure 199 What Is a Clinical Trial and Why Should You Care? 199 Taking a Close Look at the Process 200 Considering the Benefits and Risks before Signing on 202 Taking the First Steps into Volunteering 203 Finding clinical trials for PD 203 Volunteering to participate 204 Asking Important Questions before Committing 205 Part IV: Living Well with PD 209 Chapter 15: Maintaining Healthy Relationships 211 Life, PD, and Your Significant Other 212 Sharing the journey 212 Warning! Trouble ahead! 213 Avoiding the pitfalls 214 Keeping the magic alive — Sex and intimacy in spite of PD 215 Retaining personal space for each of you 216 PD and Kids — Adult or Younger 217 Addressing their fears about the future 217 If you don’t ask, they won’t help 218 PD and Grandchildren 220 PD and Parents and Siblings 221 PD and Close Friends 222 And Then There’s YOU 224 Chapter 16: PD in the Workplace 225 Doing Your Homework 225 Honestly assess your ability to continue in the job 226 Consider options that may be available 227 Deciding When to Disclose Your Diagnosis 228 From your perspective 228 From your employer’s perspective 229 Telling Your Boss 230 Getting the Facts from HR 231 Positioning the News for Co-Workers 233 Taking Steps to Protect Your Income 234 Chapter 17: Adjusting Your Routine as Your PD Progresses 237 Exploring Ways to Make Daily Activities Easier 238 Timing your activities 238 Reserving your energy 238 Taking tips from other PWP 239 Maintaining the Family Dynamic 244 Socializing with Friends 245 Going Out and About in the Community 245 Attending public events 246 Traveling 246 Volunteering — The double blessing 248 Taking a Breather — Respite for the Weary 248 A Word for the PD Care Partner 249 Part V: Coping with Advanced PD 251 Chapter 18: Facing the Progression of PD Symptoms 253 Noticing Changes Caused by Your Meds 253 When Communication Becomes Difficult 254 The challenge to vocal expression 255 Handwriting — Telling the story of your on-off cycles 256 Swallowing: You Can’t Take It for Granted 257 Your Vision: A Bump in the Road 258 To Drive or Not to Drive 258 Freezing and Rigidity: When Your Head Says “Go,” but Your Body Says “No” 259 Freezing and festination: It’s all in the legs 260 Rigidity: When your whole body locks up 260 PD and Falling — A Tricky Balancing Act 261 Mind those meds 262 Steady as she goes 262 Make adjustments along the way 262 Overcoming Sleep Disturbances 263 Those Embarrassing Constipation and Urinary Issues 264 Dealing with the Big “D” — Dementia 265 PD is not Alzheimer’s disease 265 Reviewing those cognitive symptoms 266 When Medical Treatments Are Limited 267 A Word for the PD Care Partner 267 Chapter 19: When Care Partners Become Caregivers 269 Understanding Your Primary Caregiver’s Role 270 Giving care versus partnering in care 270 Is your care partner a novice or a natural caregiver? 271 It’s called the 36-hour day for a reason 271 Considering How Your Relationships May Change 271 When you rely on your spouse or significant other: A balancing act 272 When your adult child steps up: You’re still the parent 272 When your sibling comes to your aid: Rivalries remain 273 When your friends offer to help: Are they in it for the long haul? 273 Exploring Alternative Arrangements 274 When the most obvious caregiver lives far away 274 When no one applies 275 Making the Transition 275 Learning to accept help 276 Remembering that your PD isn’t your caregiver’s fault 277 Dealing with burnout 277 Recruiting Secondary Caregivers 280 Calling another meeting 281 Extending the invitation 281 Preparing the agenda 281 Turning over the meeting 283 Getting everyone talking and committing 283 Accepting aid with appreciation and gratitude 284 A Word for the PD Care Partner 285 Get real about the time this is going to take 285 Get creative about finding the time 286 Be prepared to delegate 287 Chapter 20: Putting Your Financial and Legal House in Order 289 Gathering Important Information 289 Inventorying legal and financial documents 290 Getting the info into the right hands 293 Assessing Your Financial Health 293 Tracking income and out-go 294 Projecting costs over the long term 294 Using your assets to cover medical expenses 295 Understanding the Intricacies of Insurance 296 Qualifying for federally funded programs 297 Looking into long-term care insurance — Not just for old folks 299 Using private health insurance, disability benefits, HIPAA, and COBRA 299 Relying on other resources to pay for care 301 Making Sure Your Wishes Are Sacrosanct 302 Durable power of attorney 302 Advance directives and living wills 303 Last will and testament 304 Chapter 21: It’s Just Bricks and Mortar: Housing Options You Can Live With 305 Making Your Home PD User-Friendly 306 Safety first: Assessing your home 306 De-cluttering and hazard-proofing 308 Rearranging to go with the (traffic) flow 308 Taking Advantage of Community Care Programs 309 In-home services 309 Home healthcare services 311 Adult day care 312 Respite care 312 Deciding When It’s Time to Move 313 Bidding your abode adieu 314 Weighing the pros and cons of moving 314 Moving is 90 percent attitude 314 Redefining Your Castle 315 Weighing your options 315 Assessing for a perfect fit 319 Making a list, checking it twice: Evaluating the facilities 320 A Few Words for You and Your Care Partner 322 Part VI: The Part of Tens 323 Chapter 22: Ten Ways to Deal with Difficult Feelings 325 Chapter 23: Ten Ways to Care for Your Care Partner 329 Chapter 24: Michael J Fox, Muhammad Ali, and YOU: Ten Ways to Make a Real Difference 333 Part VII: Appendixes 337 Appendix A: Glossary 339 Appendix B: Additional Resources 347 Index 353

About the Author :
Michele Tagliati, MD, is Director of the Parkinson's Disease Center at Mount Sinai Medical Center in New York. Gary N. Guten, MD, MA, is an orthopedic surgeon, author, and Parkinson's patient. Jo Horne, MA, is the author of three books and a long-distance care partner.