A Soft Voice in a Noisy World A Guide to Dealing and Healing with Parkinson's Disease

Foreword

Bill Moyers, award-winning broadcast journalist and author

This is a story of the hero’s journey.

Not to outer space. Not to some distant battlefield. Not to glory on the athletic field. But to the most difficult of all places to sustain a struggle against the odds: to the inner reaches of one’s own heart and mind, where the meaning of life is defined and the struggle ultimately won or lost.

In his classic book The Hero with a Thousand Faces, Joseph Campbell, who devoted his life to exploring themes of the world’s great mythologies, defines the hero as a man or woman who has battled past limitations, beyond obstacles and seeming defeats, to seek and discover, in the primary springs of life, the power of transfiguration—and because of that journey to help others by sharing hard-won knowledge and wisdom.

Karl Robb is just such a hero. His is a remarkable personal journey with implications for all of us.

After several years of experiencing something amiss—bodily sensations that were puzzling and disconcerting but could not be pinpointed or identified by medical counsel—he was diagnosed at twenty-three with Parkinson’s disease. There is no way an outsider like me can grasp what such a revelation must mean to someone so young, his adulthood opening before him, sprinting downfield like a fullback in the clear, on his way to a touchdown, only to be tackled from behind and brought forcefully and painfully to the ground.

I can only imagine the fear, bewilderment, and melancholy—above all, the anger—that would overwhelm anyone hearing the diagnosis: Parkinson’s disease. But in the early bloom of life? Young Robb knew no one even close to his age with the affliction. Hearing what lay ahead of him, the thought of losing control over his life had to leave him feeling cheated, alone, forlorn.

And yet he refused futility’s embrace. For twenty years now he has made a fight of it, turning one difficult experience after enough into a continuing course in adult education for all of us—those who live with Parkinson’s disease and those of us who barely know what the words mean. Karl would learn everything he could about the disease; he would plumb every source he could find; consult first one expert and then another, including the most informed experts of all, those living with the disease itself; try one treatment and then another, not only hoping that something better would come along but taking every initiative to turn that hope into reality. He found resources to cope, reasons to fight on, and strength to persist.

And now he has written this book—written it, I hasten to add, with the help of another hero of this story, his wife, Angela. The very title is as beguiling as the story is revealing: "A Soft Voice in a Noisy World." I have learned so much from that voice, and so will you. Whether you have Parkinson’s disease or not, are a caregiver, or work in the health field, you will learn here about the disease, about hope and fear, about courage, the resolute heart—and even, I wager, about yourself. Because the message in these pages carries far beyond them: You, reader, have more power and control over your well-being than you know.

That, as Joseph Campbell told me in our PBS series on The Power of Myth, is the ultimate discovery— and reward—of the hero’s journey:

People say that what we’re all seeking is a meaning for life. I don’t think that’s what we’re really seeking. I think that what we’re seeking is an experience of being alive, so that our life experiences on the purely physical plane will have resonances within our innermost being and reality, so that we actually feel the rapture of being alive. That’s what it’s all finally about, and that’s what these clues help us to find within ourselves.

Karl Robb shows us how under the most trying circumstances a human being can find strength and purpose beyond expectations. As he writes, I have many purposes. I have a reason to heal for myself and those who care about me. My life has meaning and I will find strength and invigoration in everything I do from now on. Life has a new inspiration. A new challenge and I am willing to accept that challenge.

We are in Karl’s debt for sharing with us his experience of being alive.

Bill Moyers

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Foreword

Amy Comstock Rick, CEO, Parkinson’s Action Network

If you look up the word advocate in the dictionary, you’ll see a photo of Karl Robb.

Advocacy has been a driving theme in Karl’s life – whether it was struggling with doctors to be properly diagnosed with Parkinson’s disease in his early twenties, managing the symptoms he experiences now,

or fighting in Washington for federal funding toward better treatments and cure.

As CEO of the Parkinson’s Action Network, of which Karl is a board member, I have seen firsthand how he not only manages his disease, but also thrives in advocacy and outreach to raise awareness. Along with his wife, Angela, Karl is an active voice in the fight for federal policy support for the Parkinson’s community. He is always at the ready to go on Capitol Hill, in front of a television camera, or to meet with other advocates about how they can make a difference in their own health and for the Parkinson’s community as a whole.

In this book, Karl poignantly shares his insights on what it’s like to live with Parkinson’s disease every day. But more than that, he writes about taking control. He shares ideas for activities people with Parkinson’s– or most other diseases, really – can do to effect change in their own lives and the lives of others. Karl writes about remaining flexible, staying informed, and being inspired by both the little and big things around you. His advocacy work around quality of life issues for the Parkinson’s community cannot go unnoticed. He motivates and inspires others with his experiences, and the community is all the better for it.

The Parkinson’s disease community is comprised of so many people who are advocates for their own health, advocates for quality care for others, and advocates for research for ultimately finding a cure for this disease. Karl is a leader amongst that group and I am proud to have him as a friend. Karl, thank you for sharing your story.

Amy Comstock Rick

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Acknowledgments

I wrote this book for myself as much as for my friends seeking a way of understanding a life with Parkinson’s disease. With their help, I’ve been able to find the strength within myself to accept and manage my condition. I believe that each of us has a valuable lesson to share with the rest of the world. What follows is a collection of my insights, epiphanies, wakeup calls, awakenings, and trial and error lessons. My intent in this book is to enlighten, inspire, teach, and entertain. It is my hope that you, the reader, feel encouraged to seek your path to health and wellness after reading this.

I want to thank my wife, Angela. Without her commitment to completing this book, it might have never made it out the door. Thank you for your love and support.

Thanks to my friends with and without Parkinson’s disease, who have encouraged and supported me to get my story out.

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Introduction

"It is common sense to take a method and try it. If it fails, admit it frankly and try another. But above all, try something."—Franklin D. Roosevelt

No one plans on being ill for most of his life. For some of us, however, illness is a dire reality of life. With time, awareness, and discovery, relief may come. Be it a medication, procedure, or therapy, those of us with chronic illness live in the hope of something better coming along to treat us and bring us relief. Our future is largely dependent upon the bureaucracy of the Food and Drug Administration (FDA), the National Institutes of Health (NIH), the drug companies, the medical community, and the federal government discovering and developing those new treatments. While we wait, there is still much more for us to discover.

Illness has a powerful influence on a young life. The insecurity of knowing that you are not completely well generates fear and questions about your mortality. My journey and many of my misadventures in seeking an answer to my medical frustrations are in this book. It is my intention that I can assist you in avoiding the mistakes that I made along this winding road.

I know of no illness that comes with a learning manual. I have written the manual that I wish I had received after finding out that I had Parkinson’s disease (PD). I was only twenty-three when I got the diagnosis, but I knew something was amiss at least six years earlier.

Facing the issue of life or death and genuinely not having a clue about losing control of my body was frightening. At the time, there was no Internet and I didn’t know anyone close to my age with PD. Most material that I could find was for much older patients. I felt totally isolated and unsure of my future. Knowing what I know now gives me hope and strength that as a young man weren’t always there. I hope that my years of navigation bring you perspective and benefit. I can say here and now that, after over twenty years of dealing with Parkinson’s disease, I am seeing positive changes in my condition. I would even dare to say that I see healing. It is my hope that you find a spark here in my manual for healing that you may add to your toolbox of health and wellness.

A Soft Voice in a Noisy World is a title with special meaning. A predominant number of people living with Parkinson’s have difficulty being heard or understood because of their condition. While an individual may be soft spoken and not easily heard, the individual may still be thoughtful, cogent, and intelligent. Those who don’t understand the symptoms of this disease may question that person’s intellect because of the delivery of the message when really they would do better to base their impressions on the full content of the message being communicated.

People with Parkinson’s disease, who are known as Parkinsonians or Parkies, are often pre-judged by their movements, or lack thereof, their facial expressions, or lack thereof, and, ultimately, by their voices, or lack thereof. Outside factors, indirectly related to these individuals, can play a huge role in the severity of their condition: stress, diet, sleep, climate, and even something as innocuous as noise, can influence Parkinson’s symptoms. The title reflects how the Parkinsonian’s voice softens for some unknown reason. The voice is often unheard or lost in the din of daily life and the numerous distractions that come with it. Losing the voice can be one of the most devastating symptoms of Parkinson’s.

Whether it is at a conference or at a support group meeting, I often hear my peers and their care partners—an appropriate term for the spouses and partners who help each other and share the care—ask for a list of what works for others in the group. This book is my compilation of what I find has improved life for me and for my care partner, Angela. As there is no user’s manual per se for living with Parkinson’s disease, I decided to write one.

Much of my philosophy and points on doctors and health transcend Parkinson’s and would be applicable to living with any kind of chronic illness. Sadly, the possibility exists for any of us to get sick. No one is immune. I believe that the chronically ill have a special insight and an appreciation for life that may get lost by those not afflicted.

Time is our worst enemy and yet our best friend at the same time. Parkinson’s disease affects us all so differently and at such different rates that there is no telling how fast it might progress. We must wait patiently for a scientific breakthrough. Time is our friend because we are living and here. As long as we are here, we have options and the opportunity to seek out a solution to our problems. Those not familiar with this illness or dealing with any illness are incapable of totally understanding what it is to live ill. Whether you’re living with chronic illness, are caring for someone struggling with a chronic illness, are employed in the healthcare field, or you are just looking to get a patient’s perspective on dealing with and living with an illness, the intention of this book is to provide you with a fresh outlook on illness, and a plan for improving the quality of your life and preparing for the later stages of your illness.

More than half of my life has been spent navigating the world of medicine and doctors. Since my diagnosis with Parkinson’s disease at age twenty-three, I have been active in the Parkinson’s community. Through advocacy work with the Parkinson’s Action Network (PAN) and assisting in numerous conferences for the National Parkinson Foundation (NPF), I have made lasting friendships with an incredible network of people with Parkinson’s who have inspired me to get my story out.

It is my sincere wish that this book makes a positive and lasting change in your life. May this book help lead you on your path to health and healing. With love and compassion, I wish you the best. If you get only one thing out of this book, in my view, it should be the understanding that you have more power and control over your well-being than you know. From your choice of the drugs you take, to the foods you eat and the doctors who advise your progress, you are in charge. You are your own best advocate.

My journey is far from over and I am still learning and discovering. Finding answers and solving problems with unconventional methods may take a bit of a mind shift. Each of us has our own unique journey to follow as we move along our path to healing.

Finding relief from illness requires investigation, research, and devotion. Only through tenacious and vigorous exploration will you ultimately find the solutions you need to manage your symptoms. It may take vitamins, complementary therapies, medications, meditation, exercise, hypnosis, or something completely foreign to you. My introduction to Reiki, a type of energy therapy, almost fourteen years ago, led me on my path to health and healing. It changed my life for the better. We are all unique and mysterious puzzles. We Parkinsonians are the ambassadors for Parkinson’s disease. It is our right, responsibility, and duty to make a difference for ourselves and for all those with Parkinson’s who are unable to be heard and are seeking a better way of life.

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How to Use This Book

Illness doesn’t come with a manual. In my over twenty-year history with Parkinson’s disease, I have searched for a guide to positive living and helpful tools. I wanted insights and helpful information that I could use to help myself. The information is out there, but it took me all this time to compile and gain the knowledge to lead me down the path of healing and wellness. I have come a long way