Parkinson's Disease For Dummies, 2nd Edition by Horne, Jo

Description: Michele Tagliati, MD is Vice Chair of Neurology and Director of Movement Disorders at Cedars Sinai Medical Center. He researches Parkinson's disease and other movement disorders. Jo Horne, MA is an experienced author whose credits include Care giving: Helping an Aging Loved One and A Survival Guide for Family Caregivers. Foreword xvii Introduction 1 About This Book 1 Foolish Assumptions 2 Icons Used in This Book 2 Beyond the Book 3 Where to Go from Here 3 Part 1: Getting To Know PD 5 Chapter 1: Parkinson's Disease: The Big Picture 7 Defining Parkinson's -- A Movement Disorder 8 Navigating the unpredictable path 9 Accepting the chronic progressive factors 9 Recognizing symptoms that raise questions 10 Distinguishing between Parkinson's Disease and Related Conditions 11 A real condition or syndrome, but not PD 11 Debunking some commonly held myths about PD 12 Seeking the Care You Need 13 From medical professionals 13 From loved ones 13 While your PD progresses 14 Treating Parkinson's -- Previewing Your Options 14 Starting the Course, Staying the Course 15 Dealing with the here and now 15 Exceling as a team player 16 Working, playing, and having a life 17 Making plans for your future 17 Chapter 2: Considering Possible Causes and Risk Factors 19 Considering Causes: What Is Known and What Is a Mystery 19 Digging into environmental factors 20 Examining possible genetic factors 23 Checking out other possible causes 25 Weighing Your Risk Factors 27 Considering your age and gender 28 Taking a look at ethnicity 28 Regarding other risk possibilities 28 Knowing What We Don't Know 30 The need-to-know info 30 The attitude that busts research barriers 31 Chapter 3: Sizing Up Symptoms, Signs, and Stages 33 Familiarizing Yourself with the Lingo 34 Symptoms -- What You Look For 35 Signs -- What Your Doctor Looks For 36 Four primary signs 36 Secondary signs and symptoms 38 Non-motor signs and symptoms 39 Stages -- Understanding the Unique Path PD Can Take 41 Early-stage PD: When life can be fairly normal 42 Moderate-stage PD: When you need to accept help 43 Late-stage PD: When planning keeps you in control 44 A Few Words for You and Your Care Partner 45 Understand the impact first 45 Embrace coping strategies second 46 Part 2: Making PD Part -- But Not All -- Of Your Life 47 Chapter 4: Getting an Accurate Diagnosis 49 Bringing Up the Subject with Your Doctor 50 Scheduling an appointment 50 Preparing for your initial exam 51 Stepping through your initial exam 53 Leaving with the answers you need 54 Connecting with a Neurologist or Movement Disorders Specialist 56 Locating an experienced and qualified specialist 56 Evaluating your specialist 58 Preparing for that first visit 58 Interviewing the good doctor 59 Reviewing your first impressions 60 Moving forward if it's a good fit 61 Working with Your PD Doctor to Determine Whether You Have PD 62 Navigating the clinical exam 62 Establishing the severity and staging the progression of your PD 64 Ruling out the red herrings: What else can it be? 66 Parkinsonism, But Not PD 67 Getting a Second (or Even Third) Opinion 68 Chapter 5: You've Been Diagnosed -- Now What? 69 Sorting Out Your Emotions 70 Dodging denial and meeting your diagnosis head on 71 Allowing yourself to get angry 72 Admitting you're scared 73 Getting to acceptance 73 Taking charge and moving forward 75 Taking Action 76 Arming yourself with good information 77 Jotting down the questions you have 78 Establishing realistic and attainable goals 79 Living your life to the fullest 82 The First Next Steps: Gathering Info 82 A Word for the PD Care Partner 83 Chapter 6: Drafting Your Healthcare Team and Making a Game Plan 85 Recruiting Your Teammates 86 Lining up the doctors 86 Calling up the therapists 87 Drafting other team players 89 Making the cut 91 Establishing Game Plans 92 Prep for an emergency on the home front 92 Gather and secure personal records 93 Facilitate easy access for emergency crew 94 Act decisively if the unexpected happens 94 More tips for managing the unexpected 95 Planning for a Hospital Stay 96 Monitoring your PD meds 96 Making care providers aware of your PD 97 A Word for the PD Care Partner 98 Chapter 7: Choosing How and When to Share Your News 101 Before You Start Spreading the News 102 Establishing your ground rules 102 Preparing to state your needs 102 Meeting the challenge with good humor 103 Discussing the News with Your Care Partner 104 Telling Your Family 106 Give adults the facts 106 Set a positive tone 107 Don't sugarcoat the situation for kids 108 Giving Close Friends the News 109 Looking at the logistics 109 Embracing friends' support 109 Widening the Circle: Informing Others 111 Handling Sticky Conversations 111 Chapter 8: Young Onset Parkinson's and Lewy Body Dementia 113 Comparing YOPD to Traditional Onset PD 114 How they're the same 115 How they differ 115 Faster or slower? What's the prognosis? 116 Facing the Special Challenges of YOPD 116 Getting an accurate diagnosis 117 Handling the diagnosis: A positive attitude is the best offense 117 And the best defense is a good offense 118 Staying on track in your career 119 Dealing with YOPD's impact on relationships 120 The Dollars and Cents of YOPD Financial Planning 123 A Word for the YOPD Care Partner 125 Comparing LBD to Traditional Onset PD 126 How do you get an accurate diagnosis of LBD? 126 What are the symptoms of LBD? 127 How do you treat LBD? 127 What therapies can help people with LBD? 128 A Word for the LBD Care Partner 129 Tools and tips for dealing with LBD 129 And don't forget yourself 130 Part 3: Crafting A Treatment Plan Just For You 131 Chapter 9: Eat Well, Sleep Well, and Exercise 133 The Joy of Good Food -- Diet and Nutrition 134 Balance is the key 134 Banishing the bad and embracing the good-for-you foods 135 Food as celebration 138 Stoking Your Brain Health with Consistent Night Sleep 139 Examining sleep disorders 139 Results of sleep loss 140 Use It or Lose It -- The Real Healing Power of Exercise and Activity 141 Stretching to Enhance Flexibility 143 Neck stretches 143 Upper body stretches 146 Leg stretches 149 Lower back stretches 152 Strengthening to Build Muscle and Stabilize Joints 155 Shoulder strengthening 155 Leg strengthening 160 Other Exercise Programs That Can Help 164 Beyond a Structured Exercise Program -- PD and Physical Activity 165 Enjoying recreation 165 Keeping up with routine roles and activities 166 Exercises for the Mind and Spirit 167 Choices for the person with PD 168 Choices for the PD care partner 169 Chapter 10: Managing PD Symptoms with Prescription Medicines 171 Managing Motor Symptoms with Proven Prescription Medications 172 L-dopa and carbidopa: A dynamic duo 172 Dopamine agonists (DAs) 174 Monoamine oxidase B inhibitors (MAO-B inhibitors) 175 Dopamine action extenders - COMT inhibitors 176 Amantadine -- one more tool in the Rx toolbox 177 The new kid on the block: adenosine receptor antagonist 178 Flagging Non-Motor PD Symptoms 179 Using Your Medication Safely and Effectively 180 Partnering with your doctor and pharmacist 181 Mixing prescription and OTC medications 182 Setting up a routine for managing your meds 182 Tracking the on-off fluctuations of your meds 184 Chapter 11: When Surgery Is an Option 187 Deciding Your Candidacy for Surgery 187 Weighing Your Surgical Options 188 Taking the most traveled road: DBS 189 Considering the pros and cons of DBS 189 Tool-specific therapy: Focused ultrasound 190 Also an implant: Duopa therapy 190 Looking to future surgical possibilities 191 Undergoing Deep Brain Stimulation 191 Asking the right questions before DBS 192 Passing the presurgical tests 193 Ironing out the details 193 What to expect during and after surgery 193 Programming DBS into Your Life 196 Changes you can expect 196 Warning signs you need to heed 196 Precautions you need to take 197 Chapter 12: Considering Complementary and Alternative Medicine Therapies 199 What's in a Name? CAM Therapies Defined 200 Introducing Your CAM Options 202 East treats West: Acupuncture and other traditional Chinese medicine 203 Ohhh! Ahhh! Experiencing body-based CAM therapies 203 Exploring mind and body options to relieve tension, stress, and anxiety 204 Staying active via alternative exercise 207 Delving into dietary, protein, enzyme, and vitamin options 208 Finding the Best Practitioner 210 Considering How Your Approach to Life Can Help -- or Hinder 212 The therapeutic power of positive thinking 212 Laughter -- Still the best medicine 213 Open up to life -- Physically, mentally, and spiritually 213 Chapter 13: Combating Anxiety, Depression, and Apathy 215 Recognizing Anxiety -- What's Normal and What's Not 216 Identifying the source of anxiety 216 Measuring your level of anxiety 217 Depression -- More Than Just Sad and Blue 218 Recognizing the symptoms 218 Asking yourself the right questions 219 Dealing with Apathy and Lack of Motivation 220 Apathy versus depression 221 Invigorating an apathetic PWP 221 Finding and Accepting Help 221 Taking medication may help 222 Seeking a professional counselor 222 Sharing the emotional journey with a support group 224 Making Lifestyle Changes to Improve Your Point of View 227 Making exercise a must and diet a tool 227 Making sure to get your beauty sleep 228 Don't worry -- be happy 228 Tapping into the power of positive thinking 230 A Word for the PD Care Partner 231 Don't forget to take care of you 232 Positive steps you can take 232 Chapter 14: Clinical Trials and Your Role in the Search for a Cure 235 What Is a Clinical Trial and Why Should You Care? 236 Examining the Clinical Trial Process 237 Setting up a clinical trial 238 Following the protocol 238 Qualifying and grouping participants 239 Going for real results 240 Considering the Benefits and Risks Before Signing On 240 Volunteering for a Clinical Trial 241 Finding clinical trials for PD 242 Offering to participate 242 Asking Important Questions Before Committing 243 Grilling the research team 244 Consulting your PD support team 246 Part 4: Living Well With Pd 247 Chapter 15: Maintaining Healthy Relationships 249 Life, PD, and Your Significant Other 250 Preparing to share the journey 250 Watching out for the obstacles ahead 251 Avoiding the pitfalls 252 Keeping the magic alive -- Sex and intimacy in spite of PD 253 Retaining personal space for each of you 254 Helping Kids Deal with Your PD 255 Addressing their fears about the future 256 If you don't ask, they won't help 257 Staying Close with Grandchildren after Your PD Diagnosis 259 Seeking guidance from your grandkids' parents 259 Engaging your grandkids' innate sensitivity 260 How Your PD Can Affect Parents and Siblings 260 Seeking parental support or offering reassurance 261 Adapting to a sibling as a care partner 261 Keeping Friends Close During Your PD Journey 262 And Then There's You 264 Chapter 16: PD in the Workplace 267 Doing Your Homework Upfront 268 Honestly assess your ability to continue in the job 268 Discussing your job obligations with your doctor 269 Consider job options that may be available 270 Exploring company and government policies 270 Deciding When to Disclose Your Diagnosis 271 From your perspective 271 From your employer's perspective 272 Telling Your Boss 273 Getting the Facts from HR 275 Positioning the News for Coworkers 277 When you are the boss 277 When you're an integral team member 278 Taking Steps to Protect Your Income 278 Checking out income-generating plans 278 Looking into insurance coverage options 279 Chapter 17: Adjusting Your Routine While Your PD Progresses 281 Exploring Ways to Make Daily Activities Easier 282 Timing your activities 282 Reserving your energy 283 Taking tips from other PWP 283 Maintaining the Family Dynamic 288 Socializing with Friends 290 Going Out and About in the Community 290 Attending public events 291 Traveling 291 Volunteering -- The double blessing 293 Taking a Breather -- Respite for the Weary 293 A Word for the PD Care Partner 294 Part 5: Coping With Advanced PD 297 CHAPTER 18: Facing the Progression of PD Symptoms 299 Noticing Changes Caused by Your Meds 300 When medications wear off 300 Counteracting uncontrollable movements 300 Keeping a diary and keeping your doctor informed 301 When Communication Becomes Difficult 301 The challenge to vocal expression 302 Handwriting: Telling the story of your on-off cycles 303 Swallowing: Don't Take It for Granted 304 Your Vision: A Bump in the Road 305 Dealing with normal eye changes 305 Treating other eye conditions 306 Freezing and Rigidity: When Your Head Says Go, but Your Body Says No 306 Freezing in your tracks 306 When you get hasty with festination 307 Rigidity: When your whole body locks up 307 PD and Falling: A Tricky Balancing Act 308 Recognizing side effects from those meds 309 Cutting back on activity (Don't!) 309 Adjusting for impaired balance 310 Heeding the advice of your care team (Do!) 310 Overcoming Sleep Disturbances 310 Common causes of sleep disturbance 311 Improving sleep habits 311 Those Embarrassing Constipation and Urinary Issues 312 Tackling an errant bladder 312 When even BMs slow down 312 Dealing with the Big D -- Dementia 313 PD is not Alzheimer's disease 314 Reviewing those cognitive symptoms 314 To Drive or Not to Drive 315 When Medical Treatments Are Limited 316 A Word for the PD Care Partner 317 Chapter 19: When Care Partners Become Caregivers 319 Understanding Your Primary Caregiver's Role 320 Giving care versus partnering in care 320 Is your care partner a novice or a natural caregiver? 321 It's called the 36-hour day for a reason 321 Considering How Your Relationships May Change 322 When you rely on your spouse or significant other: A balancing act 322 When your adult child steps up: You're still the parent 323 When your sibling comes to your aid_ Rivalries remain 323 When your friends offer to help: Are they in it for the long haul? 324 Exploring Alternative Arrangements 324 Long-distance care with emergency backup 325 A caregiving community instead of an individual 325 Making the Transition 326 Agreeing to accept help 327 Remembering that your PD isn't your caregiver's fault 328 Dealing with burnout 328 Recruiting Secondary Caregivers 332 Calling another meeting 332 Extending the invitation 333 Preparing the agenda 333 Turning over the meeting 334 Getting everyone talking and committing 335 Accepting aid with appreciation and gratitude 337 A Word for the PD Care Partner 338 Get real about the time that giving care will take 338 Get creative about finding the time 339 Be prepared to delegate 339 Chapter 20: Putting Your Financial and Legal House in Order 343 Gathering Important Information 344 Inventorying legal and financial documents 344 Getting the info into the right hands 347 Assessing Your Financial Health 348 Tracking income and out-go 348 Projecting costs over the long term 349 Using assets to cover medical expenses 350 Know the Intricacies of Health Insurance 351 Qualifying for federally funded programs 352 Looking into long-term care insurance 354 Using private health insurance, disability benefits, HIPAA, and COBRA 354 Relying on other resources to pay for care 356 Making Your Wishes Sacrosanct 356 Powers of attorney: durable and otherwise 357 Advance directives and living wills 357 Last will and testament 358 Chapter 21: It's Just Bricks and Mortar: Housing Options You Can Live With 359 Making Your Home PD User-Friendly 360 Safety first: Assessing your home 360 Making repairs or additions that promote safety and security 362 Decluttering and rearranging to go with the (traffic) flow 363 Taking Advantage of Community Care Programs 363 In-home services 364 Home healthcare services 366 Adult day care 366 Respite care 367 Deciding When It's Time to Move 368 Bidding your abode adieu 369 Weighing the pros and cons of moving 369 Moving is 90 percent attitude 369 Redefining Your Castle 370 Moving in with a family member 370 Considering a more practical apartment, condo, or house 370 Taking a Look at Long-Term Care Options 372 Continuing care retirement centers 372 Independent apartment with services 373 Assisted living 373 Skilled nursing facility (SNF) or rehabilitation center 374 Hospice 374 Assessing the options for a perfect fit 375 Making a list, checking it twice: Evaluating the facilities 375 A Few Words for You and Your Care Partner 378 Part 6: The Part of Tens 379 Chapter 22: Ten Ways to Deal with Difficult Feelings 381 Banishing the Concept of "Bad" 381 Halting the Isolation 382 Corralling the Anger 382 Taming the Guilt 383 Subduing Your Fears 383 Venting Your Frustration 384 Cooling the Jealousy 384 Stopping the Spirals of Sadness 384 Caring About Apathy 385 Dumping Depression 385 Chapter 23: Ten Ways to Care for Your Care Partner 387 Honor the Partnership 387 Acknowledge Life beyond PD 388 Accentuate the Positive 389 Strike a Balance in Caregiving 389 Ask, Don't Demand 389 Use the Magic Words Often 390 Get Over Yourself 390 Accept Services as a Gift for Your Care Partner 390 Find Joy in Life 391 Encourage Laughter and Dreams 391 Chapter 24: Ten Ways You Can Make a Real Difference 393 Read More About It 393 Vote Early and Often 394 Get to Know Your Local Officials 394 Don't Just Be Informed -- Pass It On 394 Support Your Local PD Support Group 395 Rally Local Support 395 Pitch Your Story to Local Media Outlets 395 Join the Fight to Find a Cure 396 Raise Money for Research 396 Celebrate National PD Month in April 397 Appendix A: Glossary 399 Appendix B: Additional Resources 409 Index 415

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