NWPF

PD Community BlogRead Blog

Book Review: Navigating Life with Parkinson's Disease

Friday November 20, 2015

Navigating Life with Parkinson Disease, by Sotirios A. Parashos, M.D, Ph.D., Rose Wichmann, P.T., and Todd Melby. New York, Oxford University Press, 2013. xx + 293 pp.

The nautical title of Navigating Life with Parkinson Disease is fitting. To be told that we have Parkinson’s or to find ourselves caring for or about someone who has Parkinson’s is to embark on a journey into strange seas. This book is designed to help us find our way in what are for most of us uncharted waters. The preface claims that the book aims to be “a good compass” to “the basics of Parkinson’s, the theories about its causes, the symptoms of is various stages, and the available treatments, including medications, therapies, and brain surgery” (xix-xx). The book, endorsed by the American Academy of Neurology, accomplishes those aims. It will be especially helpful to the newly diagnosed and to their partners, family members, friends, and colleagues.

0000187 Navigating Life With Parkinson DiseaseIn fourteen chapters, the authors of Navigating Life with Parkinson Disease answer such questions as: What is Parkinson’s disease? What causes it? What are the four major symptoms that neurologists look for in diagnosing the disease? How will the disease change our lives? What “weapons” will help us fight back? When should we start taking levodopa? How can we manage specific symptoms like tremor, slowness, rigidity, balance, freezing, fatigue, dyskinesia, drooling. What are some of the problems that may lie ahead for us, problems with speech, vision, bladder control, constipation, cognition, loss of mobility, sleep, impulsivity, anxiety, sexuality, depression, and so on. What should we do about driving, traveling, involvement in research? Can exercise, music, dance, spirituality help us? How can we help our care partners stay healthy? What are some of the practical plans we should make for the future—things like “personal affairs,” “arrangements,” “powers of attorney,” “trusts,” and “directives”?

To raise such questions, of course, is to risk alienating us with page-after-page of reminders that we have a disease with no cure, a disease that gets only worse, a disease that makes steady inroads into our independence. We all know that growing old with Parkinson’s is no bundle of joy. The authors of Navigating Life with Parkinson Disease are to be commended for not trying to shield us from the truth about what lies ahead: “Being diagnosed with a chronic illness is frightening. It’s natural to focus on how Parkinson disease will make life worse. Undoubtedly life will present a person living with Parkinson’s with many challenges every step of the way, and feelings of despair, disappointment, loss, and being overwhelmed may often darken one’s perception of life” (85).

comforthandBut this book is, finally, about pursuing a wise life with Parkinson’s, not about preparing for an early end of life because of Parkinson’s. The authors make every effort to persuade us not to be merely angry that we have a dreaded disease, but also grateful that we have it now, not a few decades ago before discoveries of levodopa and deep brain stimulation added bonus years to our functional lives as people with Parkinson’s. They give us strategies that have helped others deal with the disease: humor, spirituality, joining support groups, getting exercise, joining a health club, taking up group singing or dancing. And they give us hope that things may get better: “There is general optimism among Parkinson disease specialists that drugs that treat the disease itself, not just its symptoms, and even a cure may not be that far off” (32).

The authors provide useful, honest, and clearly-stated advice. They use technical terms when they need to but are careful to give definitions that most of us will be able to comprehend. Some of these terms we need to understand to make sense of our disease, and some we will need to understand so that we can talk with and understand the various medical practitioners we will encounter on our voyage with Parkinson’s: blood-brain barrier, COMT inhibitors, deep brain stimulation, diplopia, dopamine receptors, micrographia, neurodegenerative, neuroprotective, neurotransmitter, orthostatic hypotension, postural instability, substantia nigra. Such terms are defined not only along the way but also in a composite glossary at the end (see pages 261–71).

Particularly engaging are the little personal bits of advice in boxes called “Ask the Experts.” For example,. Susan Imke, GPN-D, gives a two-page answer (193–95) to the question, “What should I watch or change in my diet?” The last chapter, “Planning for Your Future: Managing Your Personal Affairs,” written by two lawyers, Murray Sagsvseen and Laurie Hanson, offers advice that will prove useful for anyone wanting to provide a smooth transition to the port that lies just over the western horizon.

Sure, there are some rough seas ahead, but Navigating Life with Parkinson Disease will help us to sail them with skill, confidence, grace, and courage.

Peter G. BeidlerPeter G. Beidler
Peter G. Beidler

Recent Posts

Make Anger Your Ally
The Parkinson's Life (You Should Be So Lucky)
Distractible Me
Parkinson's Takes Guts
Being Defined by Parkinson's Disease

Archives

2017 2016
Lies That Parkinson's Disease Told Me
Managing the Holiday Blues 2016
Who Was That Masked Man?
The Rain Is Shining — A Thanksgiving Message
Book Review - H.O.P.E.: Four Keys to a Better Quality of Life for Parkinson's
David Leventhal: Dancer, Teacher, Community Leader, Humanitarian, Movement Specialist
Meet Emily!
Rhonda Foulds, Outrunning Parkinson's Disease
Book Review: The Perapatetic Pursuit of Parkinson Disease
Staff Stories - Melanie
Snake Oil, the Cure for Parkinson's.
Book Review: Nan Little
Life's a Lot Better with NWPF
Tipping Points
Book Review: Natural Therapies for Parkinson's Disease
Dare to Attend a Support Group
Ten for David
Time After Time: Kim Farmer's Story
The Glass is Half-Full
Book Review: Reverse Parkinson's Disease
Contentment
Parkinson's and Free Will
A positive attitude is everything
Book Review - Lucky Man: A Memoir
Alexithymia, the Parkinson’s Get Out of Jail Free Card
We Make Them Together: Major Decisions in Caregiving
Boxing is cool
Safety with Style: House Renovations you can hold on to
Book review: On My Own
Shaken to the Core
Isolation and Parkinson's Disease, The hiding and the hidden
Camp Brian Interview
Safety with Style: House design ideas you can hold on to
Book review: Shake Well Before Use
Notes on Acceptance
"Advice" to a person with Advancing Parkinson's Disease
Needed: New Parkinson’s Vocabulary
Caregiving: Ken's Story
A Well-Tested Testimonial, or Spin for Parkinson's
Safety with Style: House design ideas you can hold on to
Caregiving: Susan's Story
Rock Steady Boxing: Emily
Book Review: My Degeneration, A Journey Through Parkinson's
The Marble Halls of Power
Safety with Style: House design ideas you can hold on to
2015
ROCKIN’ AROUND THE GROCERY CART
Managing the Holiday Blues
Book Review: A Complete Guide for Patients and Families
The joke is on Parkinson's
I don't always like groups, but when I do...
JBC + DBS: A Mostly-Love Story (Continued)
Rock Steady Boxing: Fred Hyde
Present Moment: A Continued Conversation
Book Review: Navigating Life with Parkinson's Disease
JBC + DBS: A Mostly-Love Story
Present Moment
On the scent of Parkinson’s disease
Harold Allen (Hal) Newsom
The 2016 World Parkinson’s Congress in Portland, Oregon is Fast Approaching: Make Plans to Attend
Flowers on Dr. Starr's Tie
Leading the life of malicious whimsy
Listen: Unlocking Parkinson's Disease
Book Review: If I Can Climb Kilimanjaro, Why Can't I Brush My Teeth?
The Evolution of HOPE
QUIZ: How well do you know your Parkinson’s Disease?
Living with Hope
Notes on Hope
Tug, tug, tug
Denial on Trial
Flowers in Our Hair
Resilience: Bouncing Back from Adversity
Summer Travel
Tina Sawyer Steps Up Fundraising in Seaside
The uncooperative patient
To be in June
Pressure Sores
Caring for a Spouse Living with PD
Life Lessons
Doc Parkinson - A Eulogy
Boom Go Parkinson’s Costs
From the Depths of the Cupboards: Pumpkin Bars
Doctor's Visits
Get Moving!
Choosing a shared burden
Our Brain's "Negativity Bias" Part 2
Outside of Language
Managing Constipation in Parkinson’s Disease
Replacements
Finding Time for Caregiver Care
The Helplessness Antidote
Examples of living your best
10 exercise tips for people with Parkinson's
Bit on Basketball
Suggestions for the Shaken
Parkinson's Action Network (PAN) Report
Our Brain’s “Negativity Bias”
Living for a Cure
Three Huge Changes for People with Parkinson's
Caregiving, the Next Level
Parkinson's Pundit
Perseverance
Making Spousal Relationships Work
Parkinson’s and Luck
Strength. Courage.
Resolve to be a Better Caregiver!
Update from the Parkinson's Action Network
Strategies to Achieve our New Year’s Resolutions and Goals
Movement is Medicine
2014 2013 2012
Most popular posts of 2012
What are you grateful for this holiday season?
How can I tell whether medications are wearing off or Parkinson’s disease is progressing?
Can a person with Parkinson’s give blood?
When is the right time to start Levodopa?
Can acupuncture help PD symptoms?
Support the Caregiver in your Life
Power of the mind to move treatment further
Top 10 Foods for Parkinson’s (and counting!)
How can I prevent dizziness?
What can you tell me about laser light therapy and Parkinson’s
What is music therapy?
Should I take Coenzyme Q10 for my Parkinson’s?
How do I treat my cough at night?
Parkinson’s fitness programs need to be tailored to the individual to get results
Carrying the Olympic Torch for Parkinson’s today
Coffee reduces risk of Parkinson’s. What about other foods?
Facts about depression
How can I find a good doctor who is knowledgeable about PD and is caring as well? My doctor does not always listen.
Help for constipation
Sex, Intimacy and Parkinson’s
Does DBS affect speech?
Walking and balance can significantly impact quality of life- but is treatable.
Depression is common with Parkinson’s
Ode to Parkinson’s- Poem from Member
Music Enhances Brain Activity
How does posture change with Parkinson’s?
What is important to you?
Are hallucinations caused by Parkinson’s?
Hot Off the Press – Neupro approved by FDA
How do I find a Parkinson’s physical therapist to keep me exercising?
Does Azilect slow disease progression?
Manage nausea from medicines
Is delaying medication harmful?
Advice for newly diagnosed
Is Parkinson’s Hereditary?
Medication Timing
Is gambling a side effect of medicine?
Medication Assistance
Does stress cause Parkinson’s?
When to see a physical therapist
FDA approves DATScan
Coconut Oil
Protein’s effect on medicine
Restless Leg Syndrome