It Never Stops Taking: Parkinsons--The Undefeated

By Barry W. Lowe

When his 707 cleared the runway, he still did not feel safe and maybe he was holding his breath just a bit. When the plane cleared Vietnam, he felt better, but not entirely safe. When they landed in Oakland, California, he finally felt totally, completely safe. He felt that he could handle anything that came his way. Thirty years later, he had forgotten about the booby traps and the bullets that snapped as they flew by his head, but he noticed that he dragged his right foot when he walked and his right arm lacked movementit hung limp like a pendulum on an unwound clock. The arm didnt swing anymore. The doctors told him it was arthritis from 2 back surgeries, but he wondered if it could be more than this.

• Language: English
• Publisher: iUniverse
• Release date: Jun 14, 2012
• ISBN: 9781475926927

Barry W. Lowe

His father, sister, a paternal uncle and a maternal uncle had Parkinson’s in addition to his own personal battle. He has had seven neurologists, two stated the drugs could do no more. One suggested he start looking into a hospice . Instead he prepared himself for Deep Brain Stimulation surgery. He endured many falls resulting in 30 plus stitches, 2 dislocated thumbs, 2 shredded rotator cuffs, a dislocated shoulder, 4 broken ribs and a brain hemorrhage requiring emergency surgery. Awards: The American Institute of Chemical Engineers National Recognition Award of 1987 The American Institute of Chemical Engineers National Membership Award of 1987 The state of Oklahoma Society School Board Association Buddy Spencer Leadership Award in 2006 The Oklahoma All-state all star Board of Education in 2006 The AARP Oklahoma 50 Award in The Oklahoma Making a Difference Award in Education in 2003 The Civitan Citizen of the year award in 2007 The Ray Steiner Champions Award from the Big Brothers - Big Sisters Award in in 2009. The League of Women Voters Citizen of the year award in 2011 The Most Progressive Citizen of Bartlesville in 2008 The Rotary Paul Harris Fellow Award in 2002 The Bronze Star and Combat Infantry Badge in 1969 The Phi KAPPA PHI and the BETA GAMMA SIGMA academic societies in 1984 He was declared a living legend by the Bartlesville Magazine in 2012. The Technical Leadership award in 1991 The Outstanding Engineer in Management Award in 1997 Heis a Registered Professional Engineer in the State of OklahomaA bit upset but agreed to make the tedious changes.

Book preview

It Never

Stops

Taking

Parkinsons—The Undefeated

Barry W. Lowe

iUniverse, Inc.

Bloomington

It Never Stops Taking

Parkinsons—The Undefeated

Copyright © 2012 Barry W. Lowe

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

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ISBN: 978-1-4759-2686-6 (sc)

ISBN: 978-1-4759-2692-7 (ebk)

To my beloved wife, Karen, who typed and retyped the manuscript and supports me in the bad times.

To my father, Wilbur, and my sister, Sharon Joy, who suffered with Parkinson’s.

To Bill Woodard, my best friend, who stood with me when others wouldn’t.

To Pastor Rod MacIlvaine and Sheryl Kaufman, who reviewed the manuscript with a different perspective.

To my beloved cousin Virginia, whose father suffered through many years with Parkinson’s.

To my friend Kimberly, who did the art work for the front and back covers.

Real courage is … when you know you’re licked before you begin but you begin anyway and you see it through no matter what.

Harper Lee, To Kill a Mockingbird

Contents

Foreword

Preface

Introduction

Background to the Diary

Diary of a Parkinsonian

Conclusion

Foreword

When Barry Lowe started publishing his journal as e-mails to a few friends, I was better acquainted with Parkinson’s disease than I was with Barry. Through following the story of his experience as the disease progressed, I learned to know him better as a person, an engineer, and a scientist. His careful, almost dispassionate, observations of himself as patient and the care available to him are certainly as close to the real world as laboratory as the medical community will ever find.

Barry pulls no punches. Parkinson’s is a devastating disease that slowly eats away a person’s capabilities to a level where the core of dignity is redefined. There is no standing on pretenses when merely standing is an iffy proposition.

My father struggled with Parkinson’s the last several years of his life. He endured not only loss of control of his limbs, but also, possibly more frustrating, loss of feedback as to whether those limbs were, or even had, done what he believed his mind had directed.

Loss of control is probably more aggravating to an engineer than to most personalities. Thus, I admired Barry for seizing control of his story even as he lost control of the plot.

He determined to capture the story in detail, and now he is ready to share it with a wider audience. The final chapters are not yet unfolded, and I believe Barry knows that his ability to record them will be increasingly limited. Whether you are reading this as a patient, a caregiver, or a friend, this journal will help you understand—and perhaps conquer—this disease by controlling it in your own way.

Sheryl Kaufman

Chief Economist

Phillips Petroleum Company, Retired

Preface

It Never Stops Taking was never intended to become a book. Writing allowed me to keep my sanity during a very difficult time in my life. Writing was an outlet for my innermost emotions.

In 2002, I lost my mother, my father, and my mother-in-law in a 13-week period. All of them were elderly. Mom suffered a heart attack, went into a coma and her 3 children made the decision to remove her from life support. My mother-in-law died next from total renal failure. My father had surgery to remove an aortic aneurysm. He was in intensive care for eight weeks before his children decided to have the life support removed. He died 13 weeks after his wife.

During this string of losses, I was in my fourth year of Parkinson’s. I had started to use the Internet and had become more knowledgeable about this disease. Two facts were apparent. First, Parkinson’s never lost. Second, the average life span after one is diagnosed is 11 years.

I was fulfilling my traditional role as the alpha male when nine months later, Kris (my wife of 31 years) and I and two friends were in an automobile accident. Kris was killed immediately. Our two friends suffered broken ribs and other injuries. I didn’t have a scratch. After this loss, I was a total wreck.

As my Parkinson’s gained strength and my memory deteriorated, I used my diary to talk to Kris, and I also used it to keep track of all of my medications. I had already learned that there was no standard treatment for Parkinson’s, and the best drug for slowing the progress of the disease was developed back in 1973. Put another way, in the preceding three decades, there had been no significant research results on curing Parkinson’s disease.

In less than the course of a year, I had lost three close relatives and then my wife, my best friend. I had just about had it when the Lord gave me a helper. I never would have made it without her. Karen became my second wife.

I analyzed my personal data, including my responses to the various Parkinson’s drugs. Doctors don’t like to talk about Parkinson’s—probably because there is no right answer. I have had seven neurologists who each had different opinions about treating Parkinson’s. I have had major brain surgery to implant a medical device for a treatment called DBS, or deep brain stimulation. It slowed down the progression, but the disease continues to gain. Two doctors have told me they could not help me. I asked several nurses, Where are the patients who have had Parkinson’s for 11 years or more? They told me that the patients were all in nursing homes.

There are some drug treatments that alleviate some symptoms of Parkinson’s, but these have side effects as well. There is agreement that using Sinemet—the primary drug for Parkinson’s—can increase your risk of falling. In the last two years, I have had four broken ribs, two dislocated thumbs, two torn rotator cuffs, and one dislocated shoulder. That really hurt. In all, I’ve also had 35 stitches and staples, a brain hemorrhage that required emergency surgery, and assorted contusions of varying severity.

The intent of providing this record of several years in my journey is to make you aware of the challenges that a person with Parkinson’s must live with. At this journey’s end you will understand the feeling of going to bed each night knowing that when you wake up the next morning you will be as stiff as a board, you will need assistance to get out of bed, you will need help to put on your shoes and socks, you will need help to take a shower.

Such is the life of a Parkinsonian.

Introduction

Barry Lowe is one of the most remarkable men I’ve ever met.

I got to know Barry several years ago when he and his new fiancée came to me for premarital counseling.

A retired oil company executive and an engineering specialist, Barry had endured the worst kind of tragedy. His wife of 31 years was killed in a car wreck. The offending driver was a sixteen-year-old who’d just received her license.

Barry was devastated, no doubt, but Barry set up a meeting between himself and the driver, with intent to offer forgiveness, provided the driver got to know his deceased wife.

At the meeting, Barry showed old pictures. He regaled her with stories about Kris and the richness of their family. They both shed tears. And in the aftermath of the meeting, Barry offered his forgiveness, and he went on with his life, eventually marrying again and starting a new life with fresh purpose.

I kept discovering surprising things about Barry.

He was an active member of the local school board and quite passionate about education. Not only was he creative in leading the board, but he was also willing to personally invest in the education of students in his community. Because Barry grew up in poverty, he committed to help the children of the working poor get a good education. Along with his new wife, Karen, they founded the Lowe Family Young Scholars Foundation, a unique mentoring program for students of financially challenged families, designed especially for needy students from 8th through 11th grade.

Barry and Karen put up a huge portion of their net worth, and then obtained matching funds from other organizations, so that qualified kids who could never afford college on their own had a chance. They also recruited mentors, community partners and educational specialists