Table of Contents

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 tim 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