Parkinson's Disease For Dummies

by Tagliati, Michele; Guten, Gary; Horne, Jo; Brooks, Deborah W.

• ISBN13: 9780470073957
• ISBN10: 0470073950
• Edition: 1st
• Format: Paperback
• Copyright: 2007-01-30
• Publisher: For Dummies

Summary

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.

Author Biography

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.

Table of Contents

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