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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