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MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis

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Overview

MS and Your Feelings is the first book to specifically address the emotional pain caused by the unpredictable, disabling chronic inflammatory condition multiple sclerosis. Psychotherapist and MS patient Allison Shadday offers readers effective strategies for dealing with the psychological trauma of this disease. Shadday shares real-life MS success stories and gives insightful professional advice derived from years of counseling hundreds of chronically ill patients. Her book offers readers hope, inspiration and ...

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MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis

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Overview

MS and Your Feelings is the first book to specifically address the emotional pain caused by the unpredictable, disabling chronic inflammatory condition multiple sclerosis. Psychotherapist and MS patient Allison Shadday offers readers effective strategies for dealing with the psychological trauma of this disease. Shadday shares real-life MS success stories and gives insightful professional advice derived from years of counseling hundreds of chronically ill patients. Her book offers readers hope, inspiration and validation, teaching them how to come to terms with an MS diagnosis; strategies for identifying and managing stress triggers; ways to cope with fear, guilt, anger, loss, depression, and isolation; steps to enhance intimacy and develop a greater sense of emotional security; and more. Patient success stories illustrate the techniques described. Renowned neurologist and MS expert Dr. Stanley Cohan contributes discussions of the importance of treating MS’s emotional symptoms, the latest medical thinking, and the promising future of drug research for this challenging condition.

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Editorial Reviews

From the Publisher
...what Shadday offers is valuable, empowering advice for her fellow sufferers and their families on how to cope, understand, and overcome the adverse emotional and psychological impact of the disease. Included are effective strategies for dealing with fear and negative emotions, maintaining self-esteem, and prevailing over the disabling complications of MS. With its upbeat and practical advice, this book will find an eager audience in consumer health and patient libraries; highly recommended. — Library Journal

...In her new book, Allison Shadday thoroughly addresses this most difficult of issues with compassion and insight...from coming to terms with the initial diagnosis to learning how to handle depression, fatigue, and cognitive problems as they occur, Shadday offers insight and information... MS and Your Feelings is an easy read and a great addition to any MS library. Readers will find this a helpful reference to consult again and again over time. — Inside MS

As someone who has struggled with MS for almost 20 years, I have read many books about it. I believe this is the most comprehensive and helpful book to deal with the many emotions of MS. The exercises are especially useful for the individual, as well as their family." &#8212 Marie Schwab, English teacher, MS patient

Finally, a long overdue book on managing the emotional impact of MS! MS and Your Feelings addresses specific psychological challenges and provides in-depth questionnaires and practical strategies to help you understand and ultimately meet those challenges. Written by a woman who lives with MS and who has counseled hundreds of people with the disease, Allison Shadday explores denial and acceptance, guilt and depression, psychological numbing, loneliness, and much more. With personal insights and experiences from men and women living with MS scattered throughout, readers will undoubtedly recognize themselves and their emotional challenges, and consequently, feel validated and less alone.” &#8212Christine Ratliff, Editor, MSFocus, The Multiple Sclerosis Foundation

One of the greatest hurdles in dealing with an unpredictable disease like MS is to learn how to overcome the psychological burden of not knowing what the next day will bring. Allison Shadday helps readers realize whether you have MS or not life is unpredictable so we must all learn to be happy and content with what we have today. MS and Your Feelings helps readers bridge the distance they feel with the outside world and gives the hope of living a fulfilling happy life. &#8212 Andrew Larson, M.D. and Ivy Ingram Larson, authors of The Gold Coast Cure and Fitter, Firmer, Faster

In MS and Your Feelings Allison Shadday gives us tools that can change our perception of MS and of ourselves as MS patients. The simple exercises she recommends can empower us to amend the way we respond to the presence of MS in our lives. Allison’s words might ultimately enable us to view MS as an ally in our journey toward self fulfillment rather than as an enemy to be fought every step of the way. Allison has done a great job and a great service to MSers. &#8212 Judith Lynn Nichols, Author of Women Living with MS and Women Living Beyond MS

Library Journal
Shadday, a medical clinical social worker with multiple sclerosis (MS), here contributes the first book on dealing with the emotional impact of MS, an autoimmune, degenerative disease of the brain and spinal cord that eventually causes major physical disability. Treatments focus on medications that reduce and slow the disease's progression. What Shadday offers is valuable, empowering advice for her fellow sufferers and their families on how to cope, understand, and overcome the adverse emotional and psychological impact of the disease. Included are effective strategies for dealing with fear and negative emotions, maintaining self-esteem, and prevailing over the disabling complications of MS. With its upbeat and practical advice, this book will find an eager audience in consumer health and patient libraries; highly recommended.
—James Swanton
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Product Details

  • ISBN-13: 9780897934893
  • Publisher: Turner Publishing Company
  • Publication date: 10/28/2006
  • Pages: 240
  • Sales rank: 410,170
  • Product dimensions: 5.60 (w) x 8.48 (h) x 0.62 (d)

Meet the Author


ALLISON SHADDAY, LCSW, is a medical clinical social worker with 14 years of experience counseling chronically ill patients and their families. She has presented at both regional and national MS conferences. She is a patient advocate for Biogen pharmaceutical company, and in this role gives presentations to neurologists, patients and family members on the emotional impact of chronic disease. She was diagnosed with multiple sclerosis in 1996. Allison Shadday lives in Friday Harbor, Washington.

STANLEY COHAN,MD, noted neurologist and MS expert, Director of the Pacific Northwest Multiple Sclerosis Center in Portland Oregon, is the author of the Foreword and in the last chapter discusses the promising future of MS drug research. He lives in Portland, Oregon.

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Read an Excerpt

MS and Your Feelings

HANDLING THE UPS AND DOWNS OF MULTIPLE SCLEROSIS
By Allison Shadday

Hunter House Inc., Publishers

Copyright © 2007 Allison Shadday
All right reserved.

ISBN: 978-0-89793-489-3


Chapter One

Knowledge Is Power: Getting an Accurate Diagnosis

The most effective way to ensure the value of the future is to confront the present courageously and constructively. For the future is born out of and made by the present. - Rollo May, Man's Search for Himself

By choosing to read this book, you've accepted the challenge of confronting the present and you're taking an active role in constructively shaping your future. If you're currently living with MS, you've experienced firsthand how terrifying it can be to hear the words, "You have multiple sclerosis." An MS diagnosis can strike panic in the bravest of souls. It changes your life forever.

As someone who lives with the disease, I understand how the news can turn your world upside down. All your previous assumptions and expectations are replaced with uncertainty. It can literally feel like the beginning of the end. But it is possible to move beyond the initial reaction of fear and panic and eventually to integrate the illness into your life. Over theyears, I've watched with amazement and admiration, as hundreds of my clients have made peace with the disease in their own unique ways. Listening with an open heart and a curious mind, I've seen patients resolve their emotional conflicts with grace, dignity, and determination. Their courage has inspired me to write this book. Although identifying details have been changed to protect their privacy, many of these clients' stories are shared throughout the chapters.

Each person navigates the course of their disease differently; yet, the first step for all of us is to get an accurate diagnosis. For a number of reasons this can often be an extremely difficult undertaking. Some of you may be in the process of getting diagnosed-others may have been given a nondefinitive diagnosis. I encourage you to read on and get the facts, in order to proactively take part in the diagnostic process. Otherwise, you may be discounted or left lost in limbo with a misdiagnosis.

Defining MS

THE MYSTERY ILLNESS

In order to fully participate in the diagnostic process, it helps to know some of the basics about the physical aspects of MS. In many regards, MS is still a mystery. We do not yet know what causes it or why it affects some people and not others. And, although we now have drugs that can help treat MS, we still don't know how to cure it. That said, we have learned a great deal about the disease since it was first described by the French neurologist Jean Charcot in 1868.

Put simply, MS is a disease of the central nervous system that involves the brain and spinal cord. The central nervous system controls all our bodily functions and movements. Needless to say, the healthy functioning of this system is critical to our ability to think, feel, and move.

The brain sends and receives signals and the spinal cord uses a network of nerves to transmit those signals to different parts of the body. Our nerves are coated by a type of insulation called myelin. Problems occur when disease activity triggered by MS causes the protective myelin to break down and replaces it with scar tissue.

This process is called demyelination, which impedes the flow of signals from the central nervous system to the body. For example, while your brain may be trying to tell your legs to move, they may not be getting the message. So, damage to the nervous system can result in difficulty with day-to-day functioning. We will talk more about the specific symptoms associated with MS later in this chapter.

MISSING SIGNALS

The nervous system can be compared to the electrical system that powers your home. Nerves are somewhat like electrical wires and the myelin sheath is like the protective plastic coating on an electrical wire. The process of demyelination is often compared to stripping away the plastic coating on an electrical wire, compromising the wire. The myelin sheath, which protects and insulates the nerves, is gradually destroyed by the disease process of MS.

When this occurs, the nerves (axons) are no longer able to effectively do their job-which is to quickly communicate and send messages easily from brain to body. This means that once the damage has occurred, the information must travel in a less efficient route and push through less direct channels. Depending on the location and number of lesions, the brain's ability to communicate can be greatly disrupted.

Imagine driving into the mountains, only to be sent on a detour because a mountain pass is closed. It takes you hours longer, driving through snow and darkness, to get to your destination, and you're exhausted at the end of the trip. This is the effect that demyelination can have on your ability to function and on your energy level. In MS, this decrease in the brain's ability to process information is a primary cause of profound physical and mental fatigue. Your brain has to work much harder to get its messages across. Hence, you can become tired just from thinking.

MS is considered an autoimmune disease of the nervous system. The word "multiple," in multiple sclerosis, indicates the many areas of demyelination from repeated attacks that occur over time. The word "sclerosis" refers to the scarring that appears on the brain and spinal cord. We don't know why, but this process of demyelination differs vastly from patient to patient, and, hence, the course of the disease also varies widely. You simply can't predict how the disease will affect you. Often symptoms will resolve and patients will regain function after an attack, or some residual damage may remain, but they experience a partial recovery.

Possible Causes

by Dr. Stanley Cohan

There is also some evidence to suggest that viral infection may be the initiating step in most, if not all, cases of MS. There is a critical need to prove, or disprove, the pivotal role of viral infection in causing MS. If viral infection is the initiating event, treatment with antiviral medications could prevent onset, or rapidly terminate the disease process in its earliest stages, before significant damage to the nervous system could occur. Environmental factors, including air, water, and food-borne toxins, temperature, sunlight exposure, and nutritional deficiencies, as causes or contributors to the risk of acquiring MS, all have their adherents. Some of these proposed environmental contributors to MS risk are potentially significant, yet little or no valid scientific evidence exists to support these possible causes. Rather than dismiss these theories as invalid for lack of corroborating scientific evidence, well-designed scientific studies should be performed on the more biologically plausible of these theories, in order to establish or eliminate them as important possible contributors to MS. Although MS is not a hereditary disease in the traditional sense (you don't inherit MS), genes may play an important role in determining why one person exposed to a virus, which could cause MS, contracts the disease, while another person, exposed to the same virus does not develop MS. Although some candidate genes have been identified, the picture is currently incomplete. With proper identification of MS-risk genes, it may be possible to develop medications that turn off these genes, or block the biological effects of proteins produced by these genes, thus turning off the disease process once it has started, or preventing the disease from ever starting in a genetically susceptible individual.

TYPES OF MS

The medical community has attempted to categorize the different types of MS and the following are the currently accepted categories:

* Relapsing remitting MS is a condition developed by about 20-30 percent of patients and is characterized by periods of relapse, followed by periods of full or partial recovery and remission.

* Secondary-progressive MS is developed by about 50 percent of patients with Relapsing Remitting MS-typically 10 to 20 years after their initial diagnosis. This type of MS is characterized by a slow increase in disability without remission. * Primary-progressive MS is developed by only about 12 percent of patients. This condition causes a slow, but steady, increase in disability from the onset of diagnosis. * Chronic-progressive MS occurs in another 10-20 percent of patients. This condition involves a slow worsening of symptoms, without periods of remission, but the onset is much slower than that of Primary-Progressive MS.

As Dr. Cohan mentioned in his Foreword, most MS specialists feel hopeful that as more patients benefit from the new disease modifying treatments now available, we will see less disability and a reduction in the number of cases that become Secondary-Progressive. We will talk more about how these treatments, and other medications, can benefit you throughout the book.

Unfortunately, MS often strikes people between the ages of 20-40. It affects twice as many women as men. Many speculate that the actual number of people with the disease is much higher than the estimated 400,000, because the disease often goes undiagnosed. One reason for this is denial.

Accepting the Unacceptable

Often people intuitively know when something is seriously wrong with them, but they deny their symptoms and hope and pray that they'll go away. I know I did.

Admitting that you're having unusual symptoms and telling your doctor about your situation is in itself a gutsy step. Seeking a diagnosis requires overcoming fear and facing reality-two intimidating tasks. This was certainly the case for Sara, a woman in her early thirties who spent 12 years fearing that she might have MS. She recalls:

My college roommate was a nursing student. When I told her about my weird symptoms she said it sounded like MS. We both studied the disease and what I read scared me. Once we suspected MS, fear festered inside me like a wound. For years, when strange symptoms mysteriously appeared, panic would sear through me. Anxiety kept me from going to the doctor. After I was married, my husband finally insisted that I find out why I was so tired and forgetful, and why I sometimes felt numb. It was what I had feared all along-MS.

Sara's story is not unusual. Anxiety makes it tempting to ignore the dizziness, numbness, and other less obvious symptoms of MS. Since many early symptoms are vague and transient, it is easy to be seduced into rationalizing their existence. Marsha, an MS patient in her twenties, explains, "As long as I didn't have a diagnosis, I could pretend I didn't have a problem. It was safer to think it was all in my head, than to face it straight on."

It's not uncommon for us to ignore our instincts and deny that something is wrong with our bodies. However, facing reality is necessary in order to start managing our health. In Kitchen Table Wisdom, Dr. Rachel Naomi Remen writes, "In denying our own suffering, we may never know our strength or our greatness." We must listen to what our bodies are telling us if we're to take care of ourselves. Ultimately, the genesis of our strength and greatness comes through this knowledge.

As scary as it may be to confirm the diagnosis of MS, many feel a deep sense of relief when they finally discover the cause of their mysterious symptoms. Emma, a 38-year-old MS patient, says, "I knew something was wrong. This may sound strange, but getting the diagnosis gave me solace. MS put a name to what I was experiencing and it helped me take a course of action." Clients often instinctively know that they're ill and once someone else verifies it, the flood gates of worry are released and reason can finally take over.

This feeling of relief isn't surprising since living with ambiguity generally causes greater stress than dealing with the facts. An official diagnosis allows people to shift their focus from anxiety and fear toward a proactive treatment plan.

Getting a Diagnosis

As many of you know, even after you've made the decision to explore the cause of your symptoms, it can still be a battle to obtain an accurate diagnosis. Almost every MS patient experiences obstacles while going through the diagnostic process.

In part, this is because most general practitioners find the indicators of MS to be confusing or misleading. Since MS patients report a wide range of symptoms, including memory loss, strange pains, ringing in the ears, difficulty swallowing, clumsiness, confusion, depression, numbness, dizziness, bowel and bladder issues, and vision and balance disturbances, it is easy to understand that these problems can be attributed to many different causes. These ambiguous symptoms often lead to a series of time-consuming tests and inaccurate diagnostic conclusions. As a result, patients frequently leave their doctor's office with more questions than answers, once they have begun their quest to determine the source of their symptoms.

Trust Your Intuition

Shockingly, many of my clients have been told that their problems are psychological rather than physical in nature. In fact, not long ago, many MS patients were actually misdiagnosed as having hysteria. This can be a humiliating and discouraging experience, but you must stay the course and pursue the truth. One determined patient, Nancy, who has lived with MS for five years, describes her ordeal:

When I first went to my general practitioner to tell him about the numbness in my face, he suggested it was a reaction to stress in my new job. The same doctor told me that the numbness in my legs was caused by wearing ski boots and my dizziness stemmed from an inner-ear infection. He basically implied that it was all in my head. Finally, I went to a neurologist, who immediately suspected MS. After further testing, he confirmed the diagnosis. The worst part of the whole ordeal was that I was beginning to think I was going crazy.

By following her own intuition, Nancy found the truth she was seeking. Even today, some doctors are still hesitant to give the diagnosis of MS. One physician I spoke with was direct and honest about his dread of telling patients they had the disease: "It is difficult to tell someone in the prime of their life that they have a chronic and progressive neurological condition. I tend to take the 'wait and see' approach before sending them on to a specialist." To be fair, until recently it was difficult to definitively determine a diagnosis of MS and there were no viable treatment options available. This may have led physicians, as well as patients, to be less vigilant about exploring the possibility that MS could be lurking. Dr. Louis Rosner, author of Multiple Sclerosis, writes, "Even when MS has been strongly suspected, many doctors are reluctant to inform the patient of an unconfirmed hunch. Instead, they have been more likely to wait for more signs and symptoms to appear, a process often taking many years."

Fortunately, significant breakthroughs in MS medical research are changing the diagnostic process for the better. Great strides have been made in the last 10 years. Sophisticated magnetic resonance imaging (MRI) techniques are now used in conjunction with spinal taps, clinical histories, and physical exams to more accurately diagnose MS.

Find the Right Doctor

Whether you know you have MS (or you suspect you have the disease and are in the process of seeking a diagnosis), it is critical to find a neurologist who has experience treating MS. Because this is such an unusual disease, it requires specialized training to treat it properly. You should be able to turn to your physician for information, guidance in treatment options, direction in symptom management, and decisions about hospitalization. In addition, your doctor should be able to refer you to other specialists, such as physical therapists, counselors, occupational therapists, and home-health service workers. We will discuss the benefits of many of these services in later chapters.

(Continues...)



Excerpted from MS and Your Feelings by Allison Shadday Copyright © 2007 by Allison Shadday. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Contents

Foreword....................ix
Acknowledgments....................xiii
Introduction: Understanding Is Everything....................1
Chapter 1: Knowledge Is Power: Getting an Accurate Diagnosis....................8
Chapter 2: Coming to Terms with MS....................22
Chapter 3: Feeling Numb? Awakening Your Inner Life....................32
Chapter 4: Positive Solutions to Negative Emotions....................48
Chapter 5: Treat It and Beat It: Relieving Depression....................68
Chapter 6: Stress and MS: How to Soothe Yourself....................80
Chapter 7: Identity Crisis: Building Self-Esteem....................107
Chapter 8: Good Grief: Recognizing the Grieving Process....................119
Chapter 9: Sick and Tired of Feeling Sick and Tired....................135
Chapter 10: Avoid the Mind-Reading Trap: Sharpening Your Communication Skills....................155
Chapter 11: Staying Connected: Improving Support Networks and Enhancing Intimacy....................172
Chapter 12: Coping with Cognitive Challenges....................186
Chapter 13: Families Speak Out: Letters from Loved Ones....................199
Chapter 14: Ending on a Positive Note....................217
Hope for the Future: An Afterword by Dr Stanley Cohan....................219
Suggested Reading....................224
Resources....................227
Index....................231
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