Multiple Sclerosis E-Book

Pearl B. Werfel

• Herausgeber: Hogrefe Publishing
• Kategorie: Geisteswissenschaft
• Serie: Advances in Psychotherapy - Evidence-Based Practice
• Sprache: Englisch

Seitenzahl: 239

Veröffentlichungsjahr: 2016

Beschreibung

This innovative book will help both mental health and medical professionals empower patients or clients to live well with multiple sclerosis (MS). It is a practical, evidence-based, culturally relevant guide to the most effective current medical, psychological, and neuropsychological diagnostic methods and interventions. The book describes a biopsychosocial, multidisciplinary, and integrativeapproach to treatment and provides information on psychological, mind-body, and complementary interventions for symptom management and to increase quality of life. Both seasoned practitioners and students will find this volume useful in helping clients cope with

Leseprobe

Multiple Sclerosis

About the Authors

Pearl B. Werfel, PhD, is a clinical psychologist in private practice in San Francisco. She has been inducted into the National Multiple Sclerosis Society (NMSS) Hall of Fame for Healthcare Professionals and is recognized by them as a trainer for mental health professionals. Dr. Werfel sits on the Healthcare Advisory Committee of the Northern California Chapter of the NMSS and has led numerous workshops for that chapter. She developed an online program for pain and stress management for people with MS and co-developed a class on MS for graduate-level clinical psychology students.

Ron E. Franco Durán, PhD, is a health psychologist and the system-wide Associate Provost for Research and Scholarship at Alliant International University. He has over 30 years of clinical research experience working with persons living with chronic and life-threatening conditions. He has served on the Hispanic/Latino Advisory Board for the NMSS for the past decade, and for the past 4 years he has served on the NMSS Committee for Diversity and Inclusion.

Linda J. Trettin, PhD, is a clinical neuropsychologist with the Mercy General Hospital, Dignity Health and the MS Achievement Center. She obtained certification through the Consortium of Multiple Sclerosis Centers as a Multiple Sclerosis Certified Specialist. Dr. Trettin enjoys collaborating within an interdisciplinary team and leads NMSS-sponsored behavioral health programs.

Advances in Psychotherapy – Evidence-Based Practice

Series Editor

Danny Wedding, PhD, MPH, School of Medicine, American University of Antigua, St. Georges, Antigua

Associate Editors

Larry Beutler, PhD, Professor, Palo Alto University / Pacific Graduate School of Psychology, Palo Alto, CA

Kenneth E. Freedland, PhD, Professor of Psychiatry and Psychology, Washington University School of Medicine, St. Louis, MO

Linda C. Sobell, PhD, ABPP, Professor, Center for Psychological Studies, Nova Southeastern University, Ft. Lauderdale, FL

David A. Wolfe, PhD, RBC Chair in Children’s Mental Health, Centre for Addiction and Mental Health, University of Toronto, ON

The basic objective of this series is to provide therapists with practical, evidence-based treatment guidance for the most common disorders seen in clinical practice – and to do so in a reader-friendly manner. Each book in the series is both a compact “how-to” reference on a particular disorder for use by professional clinicians in their daily work and an ideal educational resource for students as well as for practice-oriented continuing education.

The most important feature of the books is that they are practical and easy to use: All are structured similarly and all provide a compact and easy-to-follow guide to all aspects that are relevant in real-life practice. Tables, boxed clinical “pearls,” marginal notes, and summary boxes assist orientation, while checklists provide tools for use in daily practice.

Multiple Sclerosis

Pearl B. Werfel

Private Practice, San Francisco, CA

Ron E. Franco Durán

Alliant International University, Los Angeles, CA

Linda J. Trettin

Mercy General Hospital, Dignity Health, Sacramento, CA and MS Achievement Center, Citrus Heights, CA

Library of Congress Cataloging in Publication information for the print version of this book is available via the Library of Congress Marc Database under the LC Control Number 2015956012

Library and Archives Canada Cataloguing in Publication

Werfel, Pearl B., author

Multiple sclerosis / Pearl 13. Werfel (Private Practice, San Francisco, CA), Ron E. Franco Durán (Alliant International University, LosAngeles, CA), Linda J. Trettin (Mercy General Hospital, Dignity Health, Sacramento, CA, and MS Achievement Center, Citrus Heights, CA).

(Advances in psychotherapy--evidence-based practice; volume 36)

Includes bibliographical references.

Issued in print and electronic formats.

ISBN 978-0-88937-409-6 (paperback).--lSBN 978-1-6 1676-409-8 (pdf).--

ISBN 978-1-61334-409-5 (html)

1. Multiplesclerosis. 2. Multiple sclerosis--Diagnosis. 3. Multiple sclerosis--Treatment I. Franco Durán, Ron E., author II. Trettin, Linda J.,author III. Title. IV! Series: Advances in psychotherapy-- evidence-based practice; v. 36

RC377.W37 2016

616.8’34

C2015-908127-0

C2015-908128-9

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© 2016 by Hogrefe Publishing

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Preface

Multiple sclerosis (MS) is a complex, unpredictable, and chronic neurologic disorder that can affect numerous bodily systems. There is no known cause or cure. The disease process can result in minimal symptoms or significant disability. The cover photograph illustrates the precarious nature of MS; while at one point the disease can appear to be stable, at another point, symptoms and functioning can change and successful interventions can become less effective. The role of the mental health professional has been well recognized in evidenced-based treatment of individuals living with MS. Indeed, mental health providers interface with individuals living with MS across the course of the disorder.

There is no definitive medical or psychological MS theory or treatment. However, the trend in healthcare is toward integrative medicine, and the National MS Society and the Consortium of Multiple Sclerosis Centers both recognize the importance of comprehensive care for people living with MS. Numerous professionals may be part of an MS treatment team, and each team member may have its own perspective, research, and terminology. We will be drawing on research from many fields in an attempt to highlight both the challenges and the resources available for someone who is living with MS and those who provide support.

The following abbreviations are used frequently throughout the book:

CID

Chronic illness and disability

CNS

Central nervous system

DMTs

Disease-modifying treatments

DSM-5

Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition

MS

Multiple sclerosis

NMSS

National Multiple Sclerosis Society

PPMS

Primary progressive multiple sclerosis

PRMS

Progressive-relapsing multiple sclerosis

RRMS

Relapsing-remitting multiple sclerosis

SPMS

Secondary progressive multiple sclerosis

Acknowledgments

The authors have been blessed with the ability to join with colleagues whom we enjoy and respect, to grow together and create something that will help others. We are grateful to the editors for this rare opportunity, and we especially want to thank Dr. Danny Wedding for all of his support and encouragement. Many people have offered their expertise and encouragement during this project. We wish to thank Dr. Shelley Peery for consultation and editing; Sheila Kolenc for layout and technical assistance; Dr. John A. Schafer and Dr. Sabeen Lulu for contributing their knowledge on MS; Dr. Rhoda Olkin for consultation on disability; and Dr. Rosalind Kalb, Jaclyn Smoczynski, and Janelle Del Carlo of the NMSS for their assistance and encouragement.

Dedication

This book is dedicated to people who live with MS and those who help and support them. A portion of the proceeds of this book will be donated to the National Multiple Sclerosis Society.

Table of Contents

Preface

Acknowledgments

Dedication

1 Description

1.1 Terminology

1.1.1 Psychiatric Disorders and Psychosocial Problems Associated With MS

1.1.2 Psychiatric Diagnoses Associated With MS

1.1.3 Psychosocial Problems Associated With MS

1.2 Definition

1.3 Epidemiology

1.3.1 Incidence and Prevalence

1.3.2 Underdiagnosis of MS

1.3.3 Psychiatric Diagnoses in MS

1.4 Course and Prognosis

1.4.1 Course

1.4.2 Prognosis

1.4.3 Treatment Effects on Course and Prognosis

1.4.4 Course and Prognosis of MS Signs and Symptoms

1.5 Differential Diagnosis

1.5.1 Symptoms of MS Versus Other Etiologies

1.5.2 Psychiatric Diagnoses

1.5.3 Neuropsychological Diagnosis

1.5.4 Types of Cognitive Dysfunction in MS

1.5.5 Neuropsychological Evaluation

1.6 Comorbidities

1.6.1 Medical and Biobehavioral Comorbidities in MS

1.6.2 Comorbidity Among Psychiatric Disorders

1.6.3 Comorbidity Among Cognitive Disorders

1.7 Diagnostic Procedures and Documentation

1.7.1 Diagnostic Process

1.7.2 Medical Diagnostic Procedures

1.7.3 Common Client Responses to Diagnosis

1.7.4 Psychiatric Diagnostic Procedures and Documentation

2 Theories and Models

2.1 Models of Illness and Disability

2.1.1 Moral Model

2.1.2 Medical Model

2.1.3 Minority Model

2.1.4 Biopsychosocial Model

2.2 Minority Stress Model

2.3 Depression

2.3.1 Depression and Psychosocial Factors

2.3.2 Depression and Neurologic Integrity

2.4 Anxiety Disorders

2.5 Cognitive Impairment

2.5.1 Primary Contributors to Cognitive Impairment

2.5.2 Secondary Contributors to Cognitive Impairment

3 Diagnosis and Treatment Indications

3.1 Common Points of Entry Into Psychotherapy

3.2 Psychological Evaluation

3.2.1 Mood

3.2.2 Suicide Risk

3.3 Emotional Components of Living With MS

3.4 Cognitive and Psychiatric Disorders Impeding Psychotherapy and Medical Treatment

3.4.1 Cognitive Difficulties

3.4.2 Cognitive Dysfunction and Neurobehavioral Problems

3.4.3 Depression and Pain

3.4.4 Sleep Disturbance and Psychiatric Comorbidity

3.5 Medication Issues

3.6 Psychological Difficulties of Learned Helplessness and Secondary Gain

3.6.1 Learned Helplessness

3.6.2 Secondary Gain

3.7 Prioritizing Problems and Needs

3.8 Focus of Psychotherapy

3.8.1 Health and Wellness

3.8.2 Clinical Focus

3.9 Psychosocial Adaptation

3.10 Coping

3.11 Social Support

3.12 Referral Issues

4 Treatment

4.1 Methods of Treatment

4.1.1 Integrative Healthcare

4.1.2 Medical Treatment for MS

4.1.3 Complementary and Alternative Medicine

4.1.4 Neuropsychiatric Treatment (Psychopharmacology)

4.1.5 Interdisciplinary Rehabilitation in MS

4.1.6 Cognitive Rehabilitation

4.1.7 Psychological Interventions

4.1.8 Stress Management

4.1.9 Pain Management

4.1.10 Fatigue Management

4.1.11 Mind-Body Interventions

4.1.12 Group-Based Interventions

4.2 Working With Physicians and Other Healthcare Providers

4.3 Efficacy and Prognosis

4.3.1 Neuropsychological Prognosis

4.4 Variations and Combinations of Methods

4.5 Problems in Carrying Out the Treatments

4.5.1 Managing Ambivalence, Conflicts, and Ambiguity

4.5.2 Medical Interventions

4.5.3 Noncompliance/Resistance

4.6 Multicultural Issues

5 Case Vignettes

5.1 Case Vignette: Michelle

5.2 Case Vignette: Claudette

5.3 Case Vignette: Jon

5.4 Case Vignette (Neuropsychological Evaluation): Cassie

6 Further Reading

7 References

8 Appendix: Tools and Resource

[1]1

Description

1.1 Terminology

A working knowledge of terminology related to multiple sclerosis (MS) is important. Multiple domains of an individual’s life can be touched by MS, and the disease poses various challenges. A comprehensive understanding of related terms facilitates effective communication with other healthcare providers, informs the education provided to individuals with MS, and aids the clinician’s formulation of a comprehensive treatment plan. Tables 1, 2, 3, and 4 provide an overview of relevant terminology associated with biopsychosocial factors that may impact the life of a person with MS. In addition, more detailed and inclusive overviews of MS-related terminology and definitions are available from the National Multiple Sclerosis Society (NMSS; http://www.nationalms-society.org) and the Consortium of Multiple Sclerosis Centers (http://www.mscare.org).

Table 1MS-Specific Terminology

Term

Definition

Multiple sclerosis

An unpredictable disease of the central nervous system (CNS) that disrupts the flow of information within the brain, and between the brain and body (NMSS; http://www.nationalmssociety.org/what-is-MS); four disease courses have been identified (Lublin & Reingold, 1996).

Relapsingremitting course

Episodes of acute worsening of neurologic function, with some amount of recovery and no progression in between.

Secondary progressive course

Following an initial relapsing–remitting course, the disease transitions in many people to a steadily progressive form with increased loss of function.

Primary progressive course

Continuing worsening of disease from onset, without distinct relapses.

Progressive relapsing course

Progressive disease from onset, with occasional acute relapses and continuing disease progression.

[2]

Clinically isolated syndrome

A temporary diagnosis that may initially be given if insufficient brain magnetic resonance imaging (MRI) evidence is present at first clinical presentation. Implies increased risk for future confirmed MS, given the need for subsequent evidence of further clinical relapses or new MRI lesions.

Radiologically isolated syndrome (RIS)

MRI abnormalities typical of CNS demyelination in the absence of clinical symptoms; treatment/diagnosis made on a case-by-case basis or after exam findings suggestive of demyelinating events.

Table 2Relevant Biological and Neurological Terminology

Term

Definition

Antigen

Any substance that causes your immune system to produce antibodies against it. An antigen may be a foreign substance from the environment (e.g., chemicals, bacteria, viruses, or pollen) or formed within the body (e.g., bacterial toxins or tissue cells).

Autoimmunity; autoimmune disease; immunemediated disease

The prefix auto means self – that is, the immune system is reacting against normally occurring antigens in the body, as if these antigens were foreign (NMSS).

Axon

Also known as nerve fiber; the extension of the cell body that carries messages (NMSS).

Axonal (also, dendritic) sprouting

A phenomenon in which injured axons regenerate or “sprout” new terminal connections (Loring, 1999).

Blood–brain barrier (BBB)

A semi-permeable barrier that excludes many chemicals in the blood from entering the cerebrospinal fluid (CSF) and brain. This barrier is not absolute. The probable functions of the BBB include exclusion of blood-borne toxic substances and protection from systemic neurotransmitters and hormones (Loring, 1999).

CNS

Brain and spinal cord.

Cerebral spinal fluid (CSF)

Fluid produced in the choroid plexus that serves as a protective hydraulic system to cushion the brain and spinal cord from jarring injury. CSF may be examined as part of a neurological work-up because many CSF alterations may reflect nervous system impairment. Samples of CSF are obtained by lumbar puncture (Loring, 1999), and analysis of CSF is helpful in the diagnosis of MS.

[3]

Cortex, cerebral

Outer layer of the brain consisting of gray matter. Its surface area is greatly increased by being folded into convolutions called gyri, which are separated by furrows, or grooves, called sulci (Loring, 1999).

Cranial nerves

Twelve paired nerves arising from the brain stem that innervate muscles of the head and receive sensory information, primarily from the head (Loring, 1999).

Demyelination

Destruction of the myelin sheath surrounding a nerve fiber that disrupts neural conduction. The most common demyelinating disease is MS (Loring, 1999).

Disease-modifying

treatments

Medications prescribed to modify the disease course.

Gadolinium

A chemical compound given during MRI scans that helps distinguish new lesions from old lesions.

Immunoglobulin G (IgG)

An antibody-containing substance produced by human plasma cells in diseased CNS plaques. Levels of IgG are often increased in the CSF in patients with MS.

Lhermitte’s sign

The radiation of tingling or electric-like paresthesias into the limbs or trunk on flexion of the neck.

Myelin sheath

The fatty insulating substance surrounding nerve fibers in the white matter of the brain and spinal cord (NMSS).

Neurodegenerative

Disease process that reflects the progressive loss of structure or function of neurons, including death of neurons.

Oligodendrocytes

Cells that make and maintain myelin.

Optic neuritis

An inflammatory disorder of the optic nerve that commonly occurs in only one eye and causes visual loss and sometimes blindness; it is usually temporary.

Paresthesias

Abnormal sensations such as numbness, prickling, or “pins and needles.”

Peripheral nervous system (PNS)

Nerves and axons that connect the CNS to muscles, sensory organs, and glands

Plaques (lesions)

Scarring (also called lesions).

Relapses

Random attacks of inflammation. Also known as exacerbations or flare-ups.

Spasticity

Involuntary muscle contractions leading to spasms and stiffness or rigidity (primarily affecting the lower limbs in MS).

T cells

T cells, which are one type of white blood cell in the immune system, somehow become sensitized to proteins

[4]

in the CNS. When T cells become activated, they enter the CNS through blood vessels and produce damaging inflammation. Once in the CNS, these T cells not only injure myelin, but also secrete chemicals that damage nerve fibers (axons) and recruit more damaging immune cells to the site of inflammation.

Transverse myelitis

An acute spinal cord disorder causing sudden low back pain as well as muscle weakness and abnormal sensory sensations in the lower extremities.

White matter

A component of the CNS in the brain and superficial spinal cord. White matter consists mostly of glial cells (i.e., cells that form myelin, and provide support and protection for neurons) and myelinated axons that transmit signals from one region to another. While gray matter is primarily associated with processing and cognition, white matter modulates the distribution of action potentials, acting as a relay and coordinating communication between different brain regions.

Table 3Cognitive and Neuropsychological Terminology

Term

Definition

Cognition

Mental processes associated with attention, perception, thinking, learning, and memory (Loring, 1999).

Delirium

A temporary and usually reversible confusional state involving alterations in level of arousal, disturbances of attention, and impairment in the logical stream of thought. Onset is rapid, with a fluctuating course (Loring, 1999).

Dementia

An umbrella term used to reflect the fact that cognitive dysfunction has resulted in impairment in independent living.

Neuropsychiatric;

neurobehavioral

Describes mental disorders, as well as affective and behavioral symptoms, that can be attributed to diseases of the nervous system.

[5]

Table 4Rehabilitation Terminology

Term

Definition

Rehabilitation

Neurorehabilitation aims to aid recovery from a nervous system injury/disease and to minimize and/or compensate for any functional disturbances (e.g., activities of daily living, communication, mobility). Rehabilitation specialists include an interdisciplinary team of speech, physical, and occupational therapists, as well as psychologists and physicians.

Impairments

Refers to the symptoms and limitations caused directly by CNS damage (e.g., decreased vision, decreased strength, spasticity, tremor, etc.)

Disability

Refers to the reduction in function in the performance of tasks (e.g., walking, bathing, etc.).

Handicap

Refers to the reduced ability to participate in various life situations (e.g., driving, employment, etc.) and the environmental restrictions that the patient suffers.

Remediation

Correcting the problem. This restorative approach consists of reinforcing previously learned patterns of behavior (Loring, 1999).

Compensation

An alternative means of task performance because the preferred approach has become more difficult or impossible secondary to impairment or disability. Also, modifying the environment or use of assistive devices to accommodate changes.

1.1.1 Psychiatric Disorders and Psychosocial Problems Associated With MS

Mental health professionals often find it useful to distinguish between psychosocial problems encountered by many individual living with MS and comorbid psychiatric disorders. Such a distinction can aid in the comprehensive conceptualization of the individual and treatment formulation. Psychosocial problems, which reflect psychological, interpersonal, and social adjustment difficulties, may be faced by individuals prior to definitive diagnosis of MS, as well as throughout various stages of the course of MS. Psychiatric disorders are defined by the classification system within the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; American Psychiatric Association, 2013) and the International Statistical Classification of Diseases and Related Health Problems (ICD-10; World Health Organization, 2007) and can also appear prior to or subsequent to the diagnosis of MS.

[6]1.1.2 Psychiatric Diagnoses Associated With MS

Mental health professionals have an important place in the management of MS. Common symptoms associated with MS that are amenable to psychological intervention include mood disorders, cognitive disorders, adjustment disorders, interpersonal difficulties, and potential neurobehavioral symptoms associated with neurologic disease and medication effects.

Potentially relevant comorbid psychiatric diagnoses that mental health professionals may use to classify clinically significant problems are based on the DSM-5 (American Psychiatric Association, 2013). Table 5 shows diagnoses that may be encountered within a clinical setting while working with individuals with MS. Given the variability of diagnostic codes for select disorders listed in Table 5, the reader is referred to the DSM-5 for further detail.

Table 5Psychiatric Diagnoses Associated With MS

Mood disorders

DSM-5 (ICD-10)

Major depressive disorder

296.99 (F34.8)

Adjustment disorder with depressed mood

309.0 (F43.21)

Persistent depressive disorder (dysthymia)

300.4 (F34.1)

Depressive disorder due to another medical condition

See DSM-5

Substance/medication-induced depressive disorder

See DSM-5

Bipolar (I or II) disorder (coding depends on severity and whether the most recent episode was manic or depressed)

296.89 (F31.81)

Pseudobulbar affect

F48.2

Cyclothymic disorder

301.13 (F34.0)

Disruptive mood dysregulation disorder

296.99 (F34.8)

Anxiety disorders

DSM-5 (ICD-10)

Generalized anxiety disorder

300.02 (F41.1)

Adjustment disorder with anxiety

309.24 (F43.22)

Unspecified anxiety disorder

300 (F41.9)

Anxiety disorder due to another medical condition

293.84 (F06.4)

Substance/medication-induced anxiety disorder

See DSM-5

Somatic symptom disorder or illness anxiety disorder

300.7 (F45.21)

Social anxiety disorder (social phobia)

300.23 (F40.10)

Agoraphobia; also see panic disorder

300.01 (F41.0)

Specific phobia (e.g., needle/injection phobia)

See DSM-5

[7]

Personality

DSM-5 (ICD-10)

Personality change due to another medical condition

310.1 (F07.0)

Personality disorders

301.83 (F60.3)

Personality change as an associated feature in delirium

See DSM-5

Personality change as an associated feature of major or mild neurocognitive disorder

See DSM-5

Personality change as a result of a substance use disorder

See DSM-5

Psychological factors affecting other medical conditions

316 (F54)

Cognitive disorders

DSM-5 (ICD-10)

Major or mild neurocognitive disorder due to another medical condition

See DSM-5

1.1.3 Psychosocial Problems Associated With MS

Corbin and Strauss (1988) wrote:

When a severe chronic illness comes crashing into someone’s life, it cannot help but separate the person of the present from the person of the past and affect or even shatter any images of self held for the future. Unless the illness is mild or its effects on activity are relatively negligible, who I was in the past and hope to be in the future are rendered discontinuous with who I am in the present. New conceptions of who and what I am – past, present, and future – must arise out of what remains. (p. 10)

Often, individuals are faced with adjusting their self-image from invulnerable or healthy to one that includes living with a chronic illness. Psychosocial consequences can influence numerous areas of life, with distress related to disruptions to life goals, employment, finances, independence, relationships, and activities of daily living (Mohr et al., 1999). A change in self-image may arise from any aspect of MS, such as incontinence, sexual dysfunction, reduced mobility, or cognitive problems. Therapists can explore why the changed and/or lost abilities were important and identify alternative methods to meet those needs.

Covert symptoms (fatigue, pain, cognitive dysfunction) can be disabling but not visible to others

While self-image refers to how one thinks about himself/herself, stigma reflects others’ views of an individual. Reactions from others range from avoidance to being overly solicitous. However, stigma should be differentiated from difficulties clients have in their own self-image that are projected onto others; these assumptions of how others view or will treat them may derive from the client’s own experiences and attitudes about disability, impairments, and disease prior to the diagnosis of MS. Still, individuals within one’s support system may misattribute the root cause of a symptom; for instance, fatigue may be incorrectly identified as “laziness.” Anger and frustration can develop[8] when the client is invalidated in his or her attempt to describe the impact of their symptoms to others. For instance, when explaining that they are not able participate in planned activities secondary to MS-related fatigue, others may say, “I had a busy day, too” or “I didn’t sleep well last night, either.” Similarly, clients may hear, “But you look so good,” which gives an implicit message that they are not measuring up to expectation. To follow, some symptoms are referred to as “invisible” because they are not readily apparent to others. Some examples of “invisible symptoms” include vision disturbance, fatigue, weakness, pain, prickly or tingling sensations, heat sensitivity, dizziness, and cognitive difficulties. Alternatively, others may assume that limitations exist when there is actually no evidence to support such a conclusion. Moreover, despite legal protections, clients can be vulnerable to discrimination, such as in the work environment.

Identity issues may include self-doubt, self-criticism, and the loss of one’s sense of current skills and future capabilities

Social role and relationship difficulties in MS are associated with lack of social support, isolation, and social withdrawal. In an effort to regain a sense of control over an unpredictable disease process and maintain independence, individuals can refuse help from others. Alternatively, dependency issues can develop in multiple facets of relationships, including emotional, physical, medical, and financial spheres. Within relationships, the client can experience fear of abandonment. Such fear can underlie isolation, or trigger other potential destructive behaviors that are detrimental to the relationship. For clients who are not in a relationship, uncertainty about dating and meeting a life partner is common.

Low levels of social support in MS have been shown to be associated with depression

Individuals may avoid talking to family and friends about their MS. Avoidance may stem from a fear of potentially burdening others, causing others to worry, or concern that they will be treated differently than they were prior to having MS. Relevant related psychosocial issues may include intimacy, communication, division of labor within the family, disclosure of diagnosis to others, community involvement, self-esteem, and independence. Maintaining social ties often requires new methods of approaching relationships wherein the client may learn to become more open with others about the effect of the disease and potential ways MS can affect a relationship. When faced with the prospect of having to cope with a long-term illness, the entire family system may find its usual way of functioning to be challenged.

Fatigue, depression, and cognitive dysfunction have been shown to be major determinants of quality of life in MS

A relevant dimension of psychosocial functioning is quality of life. Quality of life is a multidimensional concept related to individuals’ perception of their general well-being and level of role fulfillment across a range of different psychosocial, physical, and symptom-related phenomena. Individuals diagnosed with MS assess their quality of life as reduced compared with the general population and also lower than other chronic disease populations. Multiple challenges to both physical and psychological well-being are often present, as the person may encounter unpleasant and unpredictable symptoms, difficult treatment regimens and drug side effects, and increasing levels of physical disability. The quality of life of individuals with MS has been measured in terms of physical symptoms, mobility, emotional life, and social interaction. Further, these various areas warrant assessment and commensurate intervention over time. For instance, fatigue is a frequent, frustrating, and often disabling symptom in MS that has a major impact on quality of life. Similarly, quality of life in MS is often negatively affected by depression and cognitive dysfunction.

[9]Clinical PearlAsking Clients About Their Needs and Desires

Supportive others often feel lost when trying to figure out the “right” thing to say or do to help their loved one. Often, the question “What concerns you the most?” can facilitate a discussion based on the individual’s needs and desires. Rather than assuming what the individual could benefit from and then acting on this (potentially well-intended but misguided) assumption, this question allows clients to obtain the support they truly desire.

Given the unpredictable course, many individuals face considerable uncertainty and anxiety, leaving them feeling overwhelmed. As a result, a variety of psychosocial-relevant questions and statements may be posed by individuals living with MS:

• “I feel lost. I am not sure of who I am anymore or what the future holds for me.”

• “I am broken.”

• “How long will this last?”

• “My emotions now are so raw and hard to control.”

• “Should I tell my boss?”

• “I don’t think I’ll ever find somebody… who would want to sign up for this?”

• “I feel useless.”

• “He thinks I’m lazy. He just does not understand what happens to me when fatigue hits.”

• “Using the walker feels like I’m just giving up on myself.”

• “My attention problems make it difficult to carry on a meaningful conversation.”

1.2 Definition

MS is a chronic progressive neurologic disease that impacts the brain and spinal cord (also known as the CNS) as well as other select areas, such as the optic nerves. The CNS conducts electrical and chemical signals throughout the body to allow for thought, emotion, sensory perception, and muscle control. In MS, the flow of information within the brain, and communication between the brain and body, is disrupted.

MS is largely thought to be an immunemediated disease