IN T RODUC T ION
It Will Never Happen to Me
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t’s one of our worst nightmares. It conjures up such fear that we may deny its possibility. We call it impossible and turn the other way. Then again, perhaps we pray it will never happen—or that it can be taken away once someone we love is irrevocably changed. Whatever the array of emotions, the anger, the pain, the hopelessness, and the worry, when a stroke strikes a family member, one outcome is certain. Our lives will never be the same. Here are some sobering statistics: ■■
There are over 795,000 new and recurrent strokes each year.
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Someone in the United States has a stroke every 40 seconds.
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Stroke is the third leading cause of death in America today— and a leading cause of long-term adult disability.
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2 Introduction ■■
Approximately 160,000 people die from stroke every year— and 5.5 million survivors continue to suffer its aftermath.
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One out of every ten families is touched by stroke.
But there is good news. With proper care and knowledgeable rehabilitation, most stroke survivors can return home and resume their lives. As we hope to show within these pages, there is life after stroke.
A Woman’s Tale “My boutique had always done well. I carried classic styles, fashions that could easily be worn by teens and by my more mature customers alike. Dresses, suits, coats, accessories—even shoes and boots. I’d always done well and I loved my work. When my husband and I got divorced, I threw myself into my work more than ever. Today, I guess you could call me a working grandmother, but I don’t like to admit to the grandmother part. “When a nearby mall threatened to take away some of my business, I worked even harder, longer hours. Sundays. I wanted to keep my edge. One quiet afternoon, I was in the back, unpacking a new shipment of dresses. I’d picked up a garment—I remember it was a black sequined cocktail dress—and started to put it on a hanger when suddenly my left hand just stopped moving. There was this dress, half on a hanger. I was holding the hanger in my right hand; I dropped the dress. It was as if it had floated from my hand. I had no movement. No feeling. No sensation. The entire left side of my body felt heavy and numb. “I yelled out. My voice sounded far away, as if I was talking on a bad telephone line. My mouth felt very dry; I couldn’t move my lips very well. I yelled again, even though it sounded silly to
Introduction 3 me. I had to. My assistant was on the floor, helping a customer. She ran to the back and saw me standing in a pool of black sequins. I was gripping my desk with my right hand. If I had let go, I would have fallen. I had no control. “It was the weirdest feeling. I had no pain, just numbness. Plus, I could think. I mean I knew who I was and I knew something was happening to me. I wasn’t afraid, either, at least on one level. All I wanted to do was go home and go to sleep. I was very, very tired. “Somewhere in my consciousness I knew I had just had a stroke.” This “working grandmother” was one of the lucky ones. She’d suffered a stroke, but it was only temporary. She listened to its warning, however, and worked on managing the stress in her life. She hired another person for the boutique. She went to her doctor for a complete evaluation, and she promised to see him for regular checkups. She started to take blood pressure medication every day without fail. She began an exercise program. Within a few weeks, she was helping out at her grandson’s birthday party. She had gone back to work on a part-time basis. The fact is that not all strokes are horror stories. Like this woman’s tale, they can have happy endings. But you must heed the signs. A stroke is not just an act of fate, a terrible quick brush with bad luck. Although its name might imply otherwise, a stroke does not happen in the blink of an eye. It is the climax of a story that has been building for a long time, steadily working behind the scenes. A stroke just doesn’t happen overnight.
4 Introduction
The Background Elements The American Stroke Association’s definition says it all: “A stroke occurs when blood flow to the brain is interrupted by a blocked or burst blood vessel.” Period. But this sudden disruption can be years in the making. It can be the result of clogged blood vessels in the brain, the buildup over time of the fatty cholesterol deposits that translate into atherosclerosis. This disruption also can be created from a blood clot that travels to the brain from another part of the body, a clot that can become lodged in the blood vessels and, acting like a dam, stopping the blood supply from getting through to hungry cells. Or, less commonly, a stroke can be caused by a weakness in blood vessel walls. This vulnerability, present from birth or from uncontrolled high blood pressure, eventually can cause a blowout in the vessel. The blood then will hemorrhage, or leak out, into the brain. But whatever the disruption, the result is the same: the area beyond the clogged blood vessel, beyond the clot, beyond the hemorrhaging blowout, is not getting the blood supply that it needs. Like a lawn that isn’t watered in a drought, this area of the brain begins to dry up, to shrivel. The brain cells that aren’t “watered” will die very quickly. And whatever function that area of the brain controlled will die also. This can be as basic a function as movement or swallowing—or as complex as the way the individual perceives the world or selects a piece of music.
Introduction 5
Taking Stock You can’t change your birthright or your genes. Nor, in many cases, can you change the stressors that you have in your life, the pains or the losses. But you can do certain things to prevent a stroke, including ■■
getting your blood pressure measured at least twice a year— and taking your medication, if necessary, like clockwork
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watching your weight, eating sensibly, and exercising regularly
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having regular checkups to help catch stroke before it catches you. A doctor can tell you if your blood pressure is high, if your blood sugar is elevated, if your cholesterol levels are moving up, or if your heart is beating in an abnormal rhythm.
Furthermore, a doctor can help you recognize the most important indicator of all . . .
TIAs TIA is a name to remember. It stands for transient ischemic attack and it can save your life. Sudden blurred vision, numbness or weakness, or difficulty in speaking that lasts only a few minutes or less than twenty-four hours can be a sign that things are amiss—and that it’s time to take immediate care of yourself. In fact, if you experience these transient symptoms, you should call 911, immediately go to the emergency room, and hopefully prevent a stroke.
6 Introduction TIAs are one thing, however, and more debilitating strokes are another. For the latter, rehabilitation can mean the difference between dependency and independence, depression and acceptance, despair and hope.
When Someone You Love Has a Stroke We have had a great deal of experience treating stroke. We have seen its debilitating results—but more often we have seen positive and successful outcomes. We have seen families torn apart by stroke—only to ultimately come together and adapt to their new roles. We have seen, firsthand, in patient after patient, the results of successful rehabilitation. We have seen that success in action. We have seen hope become a reality. But for those people who develop a stroke, for those living with a person who is suddenly different, that hope may be difficult to imagine. Living with Stroke: A Guide for Families will help you determine how probable that hope is. It will help you cope with the aftermath of stroke.
Reading This Sourcebook The first part of Living with Stroke is all about understanding. We will discuss, in depth, exactly what stroke is, the different types, the causes, and the risk factors. We hope that we can help you stop a stroke from happening—or stop it from recurring. The second half of this sourcebook details the symptoms that can crop up when a stroke strikes. You also will discover the diagnostic tools that are used to determine a treatment plan.
Introduction 7 The third section of Living with Stroke involves rehabilitation—the physical, behavioral, and cognitive treatments that work, that will help a stroke patient regain a life, whether it is getting up and walking around or communicating and acting in clear and appropriate ways. Here, too, you will discover which medications work for both prevention and treatment. You will learn what you can expect from a rehabilitation hospital and the degree of assistance that you can expect. Finally, and most importantly, in the fourth part of this book, you will learn the family’s role. You will learn how to cope with your own overwhelming emotions. As you might already know, strokes do not affect just a single person. They happen to the entire family. Focusing on you and on the rest of your family, this section also outlines the various problems that can crop up when a patient is ready to return home—from therapy noncompliance to a loss of sexual feeling, from anger and depression to adapting to a new career, from simply getting dressed in the morning to setting up the house to make it as accessible as possible. And throughout all these pages, you will find words of inspiration, insights, research, ideas, and facts to help you keep going—and stay strong.
A Guide for Families Family support is crucial. We have found that a good support structure—from a spouse, a family member, a circle of friends, a significant other—is vital to recovery. Getting back does not happen in isolation. There is life after stroke, but you must lend a helping hand.
8 Introduction Before we begin our medical journey, listen to these inspiring words from Helen Keller: “We could never learn to be brave and patient, if there were only joy in the world.” There is more than hope after the “dreaded impossible” happens. There is life.