What's Your Handicap?: A Guide to Stroke Recovery for Survivors and Their Families

By Gordon Davies

When stroke comes into your life, it often comes without warning, or at
least without recognizable warning. Its impact is often devastating. Even
the most resourceful families will often find themselves at sea when it
comes to knowing what to do. They will need to make major decisions
while under considerable stressand often in the absence of information.
This, of course, is never a winning combination.
When my big one came, it wasnt entirely unexpectedId had
some warning signsbut doctors werent able to predict when, or if, it
would occur. One day I was living the life of an international consultant,
just as likely to find myself in Nairobi as in Washington or Ottawa;
the next day I was flat on my back in the IC room of the local general
hospital. I had no idea that this was the first day of my new life or that
I would spend the next year of my life in hospital. But while my life has
completely changed, I wouldnt want you to think that its been only for
the worse. Far from it!
I had my stroke twenty years ago, and I know that things are better
now, but Im not sure that theyve improved that much. I was fortunate
in that I had a very resourceful family, but in spite of this, I know that
they had a great deal of difficulty finding useful information. There was
a need then, and I believe there is a need now, for information to be
centralized and accessible. At the time of my stroke, a reasonable amount
of medical information was available, but it was spread all over the
map. The amount of available information on stroke recovery, however,
was only minimal. Unless one of your caregivers or friends was the sort
of person who was curious and went out of his or her way to become
involved in your rehabilitation program, you were left swimming in a sea
of ignorance.

• Language: English
• Publisher: Xlibris US
• Release date: Feb 14, 2014
• ISBN: 9781493145829

Book preview

WHAT’S YOUR HANDICAP?

__________________

A Guide to Stroke Recovery for Survivors

and Their Families

Gordon Davies

Copyright © 2014 by Gordon Davies.

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

Excerpt from The Man Who Forgot How to Read by Howard Engel © 2007 by Howard Engel. Published by HarperCollins Publishers Ltd. All rights reserved.

Rev. date: 02/11/2014

To order additional copies of this book, contact:

Xlibris LLC

1-888-795-4274

www.Xlibris.com

[e-mail]

538846

CONTENTS

Acknowledgements

Introduction

Chapter 1: Stroke FAQs

Chapter 2: Brain Biology for Dummies

Chapter 3: Some Medical Complications Caused by Stroke

Chapter 4: It’s All about Me: My Story

Chapter 5: Rehab and Beyond

Chapter 6: Guess Who’s Coming to Dinner?—The Strokee at Home

Chapter 7: Guess Who’s Going Out for Dinner?—The Strokee at Large

Chapter 8: Different Strokes for Different Folks

Chapter 9: Love, Laughter, and Life: Twenty Years and Counting

Information Sources

To Erik and Ben, best sons ever.

You always provided me with the best medicine—laughter!

ACKNOWLEDGEMENTS

It takes a small host of people to put together even a modest book like this one. My team consisted of many individuals, all of whom were instrumental in helping me bring What’s Your Handicap? to completion. Kath Rothwell and Joanne Mullen read selected parts of the manuscript and provided me with ever-so-helpful feedback. Susann Thiessen, my principal speech therapist when I was in rehab, kindly read the parts of the manuscript in Chapter 3 relevant to her profession. I greatly appreciate her support.

Special thanks are in order for all the people who allowed me to use their stories as case histories in Chapter 8: Ben Davis, Dane Issagonis (assisted by his mother, Karen Issagonis), Stephanie Spooner, Joe Anderson, and Howard Engel. Special thanks to Stephanie Spooner, who led me to most of the other individuals.

The cartoons found throughout the book are taken from The Hugo Calendar ’91, the result of a collaboration, many years ago, between illustrator Kevin Richardson and me. Bridget Hough did the medical illustrations in Chapters 1 and 2, Bruce Scott came up with the original layout for the cover design, and Sharon Kish digitized and prepared the visual materials for publication.

Barbara Kamienski, editor extraordinaire, suffered without complaint my feeble assault on the English language and made it possible for you, the reader, to glean what pearls of wisdom might lie herein. My wife, Kay Smythe, endured my preoccupation with writing the book and somehow managed to remain supportive throughout the entire process. I am thankful for both her patience and the many helpful suggestions she made. Last but not least, I would like to thank the team at Xlibris for bringing this project to fruition.

If, after all this help, any errors remain, they are clearly mine.

INTRODUCTION

When stroke comes into your life, it often comes without warning, or at least without recognizable warning. Its impact is often devastating. Even the most resourceful families will often find themselves at sea when it comes to knowing what to do. They will need to make major decisions while under considerable stress—and often in the absence of information. This, of course, is never a winning combination.

When my big one came, it wasn’t entirely unexpected—I’d had some warning signs—but doctors weren’t able to predict when, or if, it would occur. One day I was living the life of an international consultant, just as likely to find myself in Nairobi as in Washington or Ottawa; the next day I was flat on my back in the IC room of the local general hospital. I had no idea that this was the first day of my new life or that I would spend the next year of my life in hospital. But while my life has completely changed, I wouldn’t want you to think that it’s been only for the worse. Far from it!

I had my stroke twenty years ago, and I know that things are better now, but I’m not sure that they’ve improved that much. I was fortunate in that I had a very resourceful family, but in spite of this, I know that they had a great deal of difficulty finding useful information. There was a need then, and I believe there is a need now, for information to be centralized and accessible. At the time of my stroke, a reasonable amount of medical information was available, but it was spread all over the map. The amount of available information on stroke recovery, however, was only minimal. Unless one of your caregivers or friends was the sort of person who was curious and went out of his or her way to become involved in your rehabilitation program, you were left swimming in a sea of ignorance.

The following statistics were obtained from reports prepared by the Heart and Stroke Foundation of Canada and the American Heart and Stroke Foundation and from data posted on the Internet Stroke Center website. They may help put the problem in context.

•   15 percent of all the people who experience stroke will die as a result.

•   10 percent will recover more or less completely.

•   25 percent will suffer from minor impairments.

•   40 percent will survive with moderate to severe defects.

•   10 percent will be severely disabled and require long-term care.

•   Stroke is currently the third leading cause of death in Canada and the fourth leading cause of death in the United States.

•   More women than men die of stroke, and (rather surprisingly) more women die of stroke than of breast cancer.

•   Stroke is the leading cause of long-term disability in the United States.

As you can see above, the results of a stroke are quite distressing. They affect many people—not just the stroke survivors themselves but also their families and friends. Although they didn’t apply for the job and are seldom qualified for it, it’s family and friends who usually end up being advocates and primary caregivers for the survivors throughout the entire experience. This task is perhaps the most stressful challenge many people will ever confront.

This book is primarily written for stroke survivors and their families. I hope it will not only provide them with some understanding of what a stroke is and what causes it but also supply some practical tips to aid both survivors and caregivers in understanding the recovery process. Please remember: you’re in this thing together!

A Word about Words

You will come across the term strokee throughout this book, and you can rest assured that I know it isn’t a bona fide word. I came across it on the Internet one day, and I’ve decided I like it better than the term victim. In the context of a discussion on stroke, I reckon the word victim should be reserved for those who did not survive or perhaps for those who are afflicted but whose outcome has not yet been decided. I think the word victim has too many negative connotations, and this is an instance where I very quickly become a proponent of the old glass half full viewpoint.

I’ve tried to use medical language sparingly, but you will be required to learn some if you ever want to participate in conversations with your doctor.

Fig_0.1_Nothing_ventured_nothing_gained.tif

Hey, nothing ventured, nothing gained!

CHAPTER 1

Stroke FAQs

In this chapter, we will ask and answer all the questions you’ve always had about stroke but were too shy or afraid to ask your doctor.

1.   What is a stroke?

A stroke, or cerebrovascular accident (CVA), is a cataclysmic event that occurs in the brain as a result of its being deprived of nutrients and oxygen. This comes about in one of two ways:

•   Plaque is deposited on the walls of arteries supplying the brain, thus narrowing them and restricting the flow of arterial blood to the brain. This results in an ischemic stroke.

•   Vessels in or near the brain rupture, and blood fills the cavity between the brain and skull. The blood spilled in this way comes in contact with the cells (neurons) in the brain and kills or damages them. This is a hemorrhagic stroke.

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The Two Types of Stroke

2.   What is a mini-stroke (a.k.a. transient ischemic attack, or TIA)?

A mini-stroke is a small stroke of short duration that tends to resolve itself. It has the same symptoms as a major stroke and comes about in the same way as an ischemic stroke. Apparently, fifteen thousand people experience TIAs in Canada every year, but the real number is probably much higher because many go unreported. This is unfortunate because a TIA may be the warning of a major stroke to follow. If you have a mini-stroke, you should see a doctor immediately with a view to developing a plan to manage stroke risk factors, such as high cholesterol and atrial fibrillation.

3.   What is an arteriovenous malformation (AVM)?

An AVM is an abnormality of the circulatory system. Its causes are not known, but it is usually present at birth. Normally, the blood vessels that carry blood from the heart to an organ, like the brain, deliver it to a fine network of vessels called capillaries. Oxygen and nutrients are exchanged here with CO2 and waste products. Oxygen and nutrients move from the capillaries into the tissues of the organ, and CO2 and waste materials move from the organ into the capillaries. The blood is then carried back to the heart through the veins and reoxygenated, and the cycle continues. The abnormality in an AVM is that the arteries connect directly to the veins, with no capillaries present. AVMs vary in size and may be located throughout the body, including the brain. AVMs may rupture because of blood pressure or damage to blood-vessel tissue, allowing blood to leak into the brain, causing a stroke. Although the condition is present at birth, hemorrhages occur most frequently in people between fifteen and twenty years old, but they can also occur later in life. A number of treatments are available, and their goals are to control the bleeding and seizures (a complication that often occurs) and, if