The Bastard Disease

By Martin Soloway

Carbidopa/Levodopa, Carbidopa/Levodopa ER, Amantadine, Stalevo, Tasmar, Pramipexole, Pergolide, Selegine, Benztriptiline, Trihexyphenidyl, Melatonin, Zemplar, Zoloft, Lipitor, Seroquel, Insulin, Glyburide, Metformin,Oxybutynin, Myrbetriq, Renvela,Macrobid, Furosemide, Lexapro, Prolea

Martin Soloway graduated from the University of Connecticut in 1955 with a BS in pharmacy. He has had an extensive career in his chosen field. He owned several pharmacies, established a retail pharmacy in a community hospital, and was COO of the Connecticut branch of Omnicare, one of the largest long-term providers of pharmacy services to nursing homes in United States.
He won a national writing contest and was on the cover of the trade journal Drug Topics. Marty has been married to his college sweetheart, Sondra, for fifty-eight years and has two children and four grandchildren. He has lived been in Orange, Connecticut, for fifty years. He has written two other books about the pharmacy business.

• Language: English
• Publisher: AuthorHouse
• Release date: Sep 17, 2014
• ISBN: 9781496930088

Martin Soloway

Martin Soloway graduated from the University of Connecticut in 1955 with a BS in pharmacy. He has had an extensive career in his chosen field. He owned several pharmacies, established a retail pharmacy in a community hospital, and was COO of the Connecticut branch of Omnicare, one of the largest long-term providers of pharmacy services to nursing homes in United States. He won a national writing contest and was on the cover of the trade journal Drug Topics. Marty has been married to his college sweetheart, Sondra, for fifty-eight years and has two children and four grandchildren. He has lived been in Orange, Connecticut, for fifty years. He has written two other books about the pharmacy business.

Book preview

© 2014 Martin Soloway. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 09/10/2014

ISBN: 978-1-4969-3009-5 (sc)

ISBN: 978-1-4969-3008-8 (e)

Any people depicted in stock imagery provided by Thinkstock are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Contents

Chapter One

Chapter Two Caregivers

Chapter Three The Disease

Chapter Four Drugs

Chapter Five Problems and Symptoms

Chapter Six Urinary and Fecal Incontinence

Chapter Seven Cognitive Disturbances/Dementia

Chapter Eight Progression of Disease

Chapter Nine Conclusion

Addendum

About The Bastard Disease

In their practices dealing with PD patients, these movement disorder neurologists perform their usual and customary exams on the patients and educate them about the negative progression that will occur over time, the decrease in the quality of life, and the reason for frequently tweaking the drugs. The neurologists who encouraged me to write this story thought that my knowledge and experience with Parkinson’s disease as a pharmacist, husband, caregiver, and daily observer could help the patients and caregivers have a better understanding of the motor symptoms and later give some suggestions to cope with the dementia and cognitive decline. I also discuss the complicated drug regimens that many PD patients have to take because of various other medical problems that Parkinson’s can create for almost every organ of the body. I have written in detail the daily problems that take place in the homes that neurologists never see and in a perfect world would like to know about their patients’ lives outside the office environment.

Introduction

It is one thing to age with the usual and customary diseases that a person expects he or she will have as he or she grows older, but to be totally incapacitated by Parkinson’s disease (PD)—or, as we call it, the bastard disease—was totally unexpected, unwanted, and sad.

Parkinson’s disease has decimated our lives. We were sixty-year-olds with a nice, normal existence, and then our peaceful lives were suddenly cast into frequent physician appointments, hospital visits, multiple drugs, and endless tests. Health issues took up all our time.

Sandy’s health was our prime mission. We were no longer doing everything together for pleasure. I retired to take care of her, and she had to accept me being around her all the time.

PD took our individualism away and our usual lives. Movement disorders, hallucinations, cognitive issues, walkers, transfer chairs, and aide help became part of our new vocabulary. The disease affects almost every organ of the body. It is nasty and difficult to comprehend.

Parkinson’s disease obliterated vacation plans, golf, tennis, art performances, restaurant dinners, airplane travel, train rides, long walks, second cars, shopping, and visiting. Those things were all in the past.

A normal life could no longer be achieved. Our new goal was extending our lives together in our home.

Chapter One

About twenty years ago, my wife felt a slight tremor in her left arm and had a little difficulty in walking a straight line. Sandy was an avid tennis player who found she could not track down tennis balls in her biweekly game. In addition, she had an impaired sense of smell and difficulty in reading books, and her motor control was not normal. A good physician friend suggested she see a neurologist.

I knew a neurologist with good credentials and recommendations. After a complete physical and interviews with both of us, she discussed her diagnosis: my wife was in the early stages of Parkinson’s disease (PD). At first, we could not believe this conclusion because my wife was never exposed to any of the products that are thought to contribute to a person acquiring the disease. Also, to the best of our knowledge, no one in her family had any neurological diseases.

The neurologist went over the Why me? scenario and the degenerative disorder’s devastating, progressive effect on the body. She told us about the death of neurons in Sandy’s brain, which would precipitate many problems (instability, dyskinesia, tremor, voice issues, swallowing difficulties, and slowness in movement). It is difficult to believe that some of the worst problems would involve cognitive mental issues, including hallucinations, short-term memory loss, and speech disorders. The doctor only skimmed the surface of what was to become our twenty-year odyssey.

We were devastated. Unfortunately, in the past twenty years, we have witnessed this prophecy coming true and watched the deterioration of her body. Her poor stability has affected her walking and standing—and her reading, eating, tasting, mental capabilities, hygiene, and sleeping.

The side effects of the drugs she has to take—and the drug interactions—are overwhelming and difficult to tolerate and control. Later, I will discuss at length each of the problems we have experienced and are still experiencing.

Shortly after the diagnosis was confirmed, blockbuster negative physical problems manifested themselves: frequent urination, thirst, fatigue, and increased appetite. Type 2 diabetes was confirmed for this once dynamic woman. A few years later, fluid in her lungs led to congestive heart failure, which led to triple bypass surgery, a hospital stay, and six weeks of intensive cardiac rehabilitation.

Another year brought another surgery and another hospital stay to have a pacemaker implanted in her chest to restore and regulate a normal heartbeat. About six months later, when she complained to her cardiologist that she was feeling very lethargic, totally exhausted, with no desire for food, she was hospitalized and subsequently underwent aortic and mitral valve replacement surgeries.

While in the hospital, a nephrologist was called in to check her low urine output and very high creatinine levels. Recently, she had another surgery because the cardiologist found that her pacemaker’s battery was low in output and not running efficiently. He explained that surgery was necessary because the pacemaker’s batteries are not able to be changed, which means the pacemaker would have to be taken out of the chest cavity and be replaced with a new pacemaker. Thank goodness that the replacement surgery was done as an outpatient, requiring a total of only three hours in the hospital.

Even though we will never be certain whether Parkinson’s disease was the only cause of these monstrous problems, I am convinced that a healthy and active woman’s body does not disintegrate as quickly from other diseases when compared to what has happened to my wife. Besides all the known problems PD causes, we are positive it contributed to—and is responsible for—most of Sandy’s medical issues.

We were thankful for our vision, the opportunity to enroll in a good insurance policy, and buying the correct insurance to pay for her medical expenses. With hospital visits, drugs, and the approximately thirty-seven physicians who saw her in the hospital and other office visits, Sandy amassed medical bills in