Howie Vs. Creutzfeldt-Jakob Disease

By Sandy Bosman

This is a true story about our journey with a disease called, “Creutzfeldt-Jakob Disease, otherwise known as C.J.D.”

There are many different forms of this disease.

I am writing about one of the forms that took my husbands life in hopes it will help make someone else’s life a little easier. With this type the ending is the same. Death!

This book will help educate you with things to come.

• Language: English
• Publisher: iUniverse
• Release date: Sep 1, 2020
• ISBN: 9781663207234

Sandy Bosman

My name is Sandy Bosman . I was the wife of Howie Bosman. I am the baby of nine and mother of three. I also, have 5 grown children. I worked at a hospital as a staffing coordinator. If this book help one person to understand a little more about this awful disease, my goal would be complete.

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Copyright © 2020 Sandy Bosman.

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 author except in the case of brief quotations embodied in critical articles and reviews.

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Any people depicted in stock imagery provided by Getty Images are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

ISBN: 978-1-6632-0724-1 (sc)

ISBN: 978-1-6632-0725-8 (hc)

ISBN: 978-1-6632-0723-4 (e)

Library of Congress Control Number: 2020915660

iUniverse rev. date:   09/01/2020

Contents

About Creutzfeldt-Jakob Disease (CJD)

Introduction

Chapter 1   Our Journey

Chapter 2   Home

Chapter 3   The Psych Hospital

Chapter 4   The Nursing Home

Chapter 5   He’s Home

Chapter 6   Nursing Home 2

Chapter 7   Our Final Journey

About Creutzfeldt-Jakob Disease (CJD)

Creutzfeldt-Jakob disease (CJD) is a fatal degenerative brain disorder. Early symptoms include memory problems, behavioral changes, poor coordination, and visual disturbances. Later, dementia, involuntary movements, blindness, weakness, and coma occur. About 90 percent of people die within a year.

CJD is the most common human form of a group of rare, fatal brain disorders known as prion diseases. Creutzfeldt-Jakob disease occurs when prion protein, which is found throughout the body but whose normal functions are not yet known, begins folding into an abnormal three-dimensional shape. This shape change gradually triggers prion protein in the brain to fold into the same abnormal shape.

CJD causes a type of dementia that gets worse unusually fast. Through a process that scientists do not yet understand, misfolded prion protein destroys brain cells. Resulting damage leads to rapid decline in thinking and reasoning as well as involuntary muscle movements, confusion, difficulty walking, and mood changes.

CJD is rare, occurring in about one in one million people annually worldwide.

There are different forms of Creutzfeldt-Jakob disease, along with different symptoms. The most common are sporadic and familial.

Sporadic CJD develops spontaneously for no known reason. It accounts for 85 percent of cases. On average, sporadic CJD first appears between the age of sixty and sixty-five. Scientists believe the disease begins when prion protein somewhere in the brain spontaneously misfolds, triggering a domino effect that misfolds prion protein throughout the brain.

Mutations in the prion protein gene also may play a yet-to-be-determined role in making people susceptible to acquiring CJD from an external source. Scientists do not yet understand why.

Familial CJD is caused by certain changes in the chromosome 20 gene coding the biological blueprint for prion protein. People who develop familial CJD do so because they inherited the genetic changes from a parent. Familial CJD accounts for about 10–15 percent of cases. It develops, on average, at a younger age than sporadic CJD, with some genetic types appearing as early as age twenty.

Acquired CJD results from exposure to an external source of abnormal prion protein. These sources are estimated to account for about 1 percent of CJD cases. There are two most common outside sources. One of these is medical procedures involving instruments used in neurosurgery, growth hormone from human sources, or certain transplanted human tissues. The risk of CJD from medical procedures has been greatly reduced by improved sterilization techniques, new single-use instruments, and synthetic sources of growth hormone. The other source is meat or other products from cattle infected with bovine spongiform encephalopathy (mad cow disease) recognized in the mid-1990s. Scientists traced this new type of CJD to consumption of beef from cattle whose feed included processed brain tissue of other animals.

Common symptoms of CJD experienced by an individual are as follows:

• depression

• agitation

• mood swings

• rapidly worsening confusion

• judgment

• problems with memory, thinking, and planning

• muscle stiffness

• twitches

• involuntary jerky movements

There is no single test or any combination of tests that can diagnose sporadic CJD in a living person, but the following tests may help determine whether an individual has CJD.

EEG (electroencephalogram), which measures the brain’s patterns of electrical activity in the same way an EKG measures the heart’s electrical activity.

MRI (brain magnetic resonance imaging), which can detect certain brain changes consistent with CJD.

Spinal tap, a lumbar puncture test of the spinal fluid for the presence of certain protein.

There is no treatment that can slow or stop the underlying brain cell destruction caused by Creutzfeldt-Jakob disease and other prion diseases. Various drugs have been tested but have not shown any benefit. Clinical studies of potential CJD treatment are complicated by the variety of the disease and its rapid progression.

Researchers have found no evidence that the abnormal protein is commonly transmitted through sexual activity or blood transfusion.

Current therapies focus on treating symptoms and on supporting individuals and families coping with CJD. Doctors may prescribe painkillers or muscle relaxers for twitching. In the later stages of the disease, individuals with CJD become completely dependent on others for their daily needs.

CJD progresses rapidly. Those affected may show signs of inability to move, speak, or feed themselves. An estimated 90 percent of those diagnosed with sporadic CJD die within one year. Those with familial CJD tend to develop the disorder at an earlier age and survive somewhat longer.

Help and support is available. Call 1-800-659-1991.

Introduction

I dedicate this book to my best friend, my 4-H’er (my hot, handsome husband, Howie). Our time together was way too short. Thank you for choosing me and for showing me how love really feels.

This book describes what I know and what I lived with for sixteen months. I am not a doctor, although I have worked in the hospital setting off and on for 17 years, in various positions. I was the wife of an amazing man, and this was our journey. Reader, though your journey may not be exactly like ours, I hope this helps you—and others—to understand a little bit more about this awful disease.

The disease is neither the fault of the person who has it nor your fault. It is God’s will.

Although I have experienced a great deal of sadness and anger, I am also grateful for the time my late husband and I shared together.

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Chapter 1

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OUR JOURNEY

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Howie and my journey with what we now know as CJD—Creutzfeldt-Jakob disease—started off with a bang. Prior to his first major event, my husband showed periodic signs of forgetfulness and memory loss. We had been in to see his family physician, and he would have an MRI and a CT scan done to investigate the cause of these signs. All scans had come back in the normal range. On March 17, 2016, there was a significant change.

I worked as a second-shift manager at a local restaurant. It was a typical Tuesday evening; I arrived home around 10:30 p.m. Howie and I would usually stay up and watch the evening news together, but this night he had told me he was tired and wanted to go to bed early. I decided to stay up and watch the news, joining him when it was over. Howie was already asleep when I came in, and I was soon to follow.

It was around 1:00 a.m. when I awoke to Howie saying, Who are those two women in our room? When I asked him where, he replied, Over by the coat tree. There were two coat trees in our room, and he was looking at mine. I told him that there was not anyone there. He was insistent.

I said, Maybe it’s our mothers watching over us. I turned on the light to show him that it was only the coat tree and said, Your mind is playing tricks on you, so go back to sleep. Howie got back into bed, and before I knew it, he was able to go back to sleep.

Later, at about 3:30 a.m., I was awakened again by Howie. This time he said, You have to get up!

I asked, Why?

Howie said, The children are out in the living room, and you need to get up and take care of them. (When Howie referred to the children, he meant our grandchildren.) This time he would not stop bugging me until I got up and went with him into the living room. I tried to tell him that his mind was playing tricks on him, but he was not buying it.

Next, he was seeing the children outside in the snow without coats on. He asked, Why don’t they have coats on? And whose blue car is that in the driveway? When is their mom coming to get them?

I said, There is no blue car.

Howie insisted that there was a blue car in the driveway. Then he started going from one hallucination to another. It did not stop. At one point he opened the sliding door in our dining room and yelled out, I can teach you to ski! You have to bend your knees, dumbass! Howie was an avid skier, but we did not live on a lake. He was seeing water, thinking that our backyard was a lake. I closed the slider. It was March, there was snow on the ground, and it was cold. He was getting mad because I was not seeing what he was seeing.

I asked him, What’s my name? He looked at me with a puzzled expression on his face and could not tell me.

I asked Howie, What is my name?

He looked at me and said, Wait a minute!

I waited, but he could not remember my name. In fact, he no longer knew my name from that day forward.

It did not matter what I said or did. He just went from