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 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