Primary Progressive Multiple Sclerosis

Overview

Primary progressive multiple sclerosis (PPMS) affects approximately 10 percent of the MS population. It is characterized by a steady decline in function without relapses, and the medications that have changed the lives of many people with the relapsing forms of MS are largely ineffective in people with PPMS.

Primary Progressive Multiple Sclerosis: What You Need to Know addresses the wide variety of physical and emotional issues experienced by people with PPMS and their families....

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Primary Progressive Multiple Sclerosis: What You Need To Know

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Overview

Primary progressive multiple sclerosis (PPMS) affects approximately 10 percent of the MS population. It is characterized by a steady decline in function without relapses, and the medications that have changed the lives of many people with the relapsing forms of MS are largely ineffective in people with PPMS.

Primary Progressive Multiple Sclerosis: What You Need to Know addresses the wide variety of physical and emotional issues experienced by people with PPMS and their families. Chapters explain the nature of the disease and its characteristics, as well as its comprehensive multidisciplinary management. These include medical and nursing care, physical and occupational therapy, social support, caregiver and family issues, mental health, and quality of life.

The book is jointly sponsored by the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America. These organizations have made a major commitment to improving the lives of everyone living with PPMS, and are developing extensive resources to serve their needs.

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Editorial Reviews

Doody's Review Service
Reviewer: Jonathan L. Carter, MD (Mayo Clinic Arizona)
Description: This patient guide to understanding primary progressive MS (PPMS) is written by several leading authorities in the field and sponsored by the two leading MS nonprofit organizations. It provides useful, practical guidance for patients with PPMS and their caregivers.
Purpose: The purpose is to provide current information on the diagnosis, treatment, symptom management, wellness, and socioeconomic issues for patients with PPMS and their caregivers. There have been few educational materials developed specifically for this type of MS, and this book meets its objectives.
Audience: Written primarily for patients and their caregivers, the book also may be useful for healthcare providers who work with PPMS patients.
Features: The first of the book's three parts describes the known facts about PPMS, including diagnosis, treatment, and current research. The second part deals with rehabilitation, symptom management, assistive devices, and wellness. The last part covers emotional and quality of life issues, family and social issues, information for caregivers, and economic/legal issues. The appendix on resources is a particularly helpful source of further information. The book is well written for a lay audience, with a glossary that explains medical terminology. There are a few minor factual errors in the book, such as the statement, "Balance problems are not common in PPMS," in chapter 5, but overall the book is accurate and current.
Assessment: This is an excellent resource for PPMS patients and their caregivers. It also may be useful for healthcare providers who do not have extensive knowledge about PPMS. There really are no other resources with this type that provide a comprehensive overview of PPMS for the lay public, so this is a welcome addition. It is written by credible authorities and cosponsored by the two leading nonprofit MS organizations, so it is well-researched and provides a balanced view of both conventional and nonconventional therapies. I highly recommend it to MS patients and their families and caregivers.
From The Critics
Reviewer:Jonathan L. Carter, MD(Mayo Clinic Hospital)
Description:This patient guide to understanding primary progressive MS (PPMS) is written by several leading authorities in the field and sponsored by the two leading MS nonprofit organizations. It provides useful, practical guidance for patients with PPMS and their caregivers.
Purpose:The purpose is to provide current information on the diagnosis, treatment, symptom management, wellness, and socioeconomic issues for patients with PPMS and their caregivers. There have been few educational materials developed specifically for this type of MS, and this book meets its objectives.
Audience:Written primarily for patients and their caregivers, the book also may be useful for healthcare providers who work with PPMS patients.
Features:The first of the book's three parts describes the known facts about PPMS, including diagnosis, treatment, and current research. The second part deals with rehabilitation, symptom management, assistive devices, and wellness. The last part covers emotional and quality of life issues, family and social issues, information for caregivers, and economic/legal issues. The appendix on resources is a particularly helpful source of further information. The book is well written for a lay audience, with a glossary that explains medical terminology. There are a few minor factual errors in the book, such as the statement, "Balance problems are not common in PPMS," in chapter 5, but overall the book is accurate and current.
Assessment:This is an excellent resource for PPMS patients and their caregivers. It also may be useful for healthcare providers who do not have extensive knowledge about PPMS. There really are no other resources with this type that provide a comprehensive overview of PPMS for the lay public, so this is a welcome addition. It is written by credible authorities and cosponsored by the two leading nonprofit MS organizations, so it is well-researched and provides a balanced view of both conventional and nonconventional therapies. I highly recommend it to MS patients and their families and caregivers.
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Product Details

  • ISBN-13: 9780982321904
  • Publisher: DiaMedica
  • Publication date: 12/15/2009
  • Pages: 128
  • Sales rank: 727,905
  • Product dimensions: 6.10 (w) x 8.92 (h) x 0.51 (d)

Table of Contents

Preface ix

Foreword from the National Multiple Sclerosis Society xi

Foreword from the Multiple Sclerosis Association of America xiii

About the Authors xv

Introduction xvii

Part I Facts About Primary Progressive Multiple Sclerosis

1 What Is Primary Progressive Multiple Sclerosis and How Is It Diagnosed? 1

2 How Is Primary Progressive Multiple Sclerosis Managed? 15

3 Research and Clinical Trials 19

Part II Maintaining And Improving Health And Function

4 How Does Rehabilitation Maintain and Improve Function? 31

5 Symptom Management: Treatment Options 37

6 Technology and Adaptations That Can Make Life with Primary Progressive Multiple Sclerosis Easier to Manage 57

7 Wellness and Primary Progressive Multiple Sclerosis: An Attainable Goal 65

Part III Quality of Life: Happiness is a State of Mind, Not of Health

8 Emotional and Quality of Life Issues 77

9 Family and Social Issues 89

10 Carepartner Support and Resources 99

11 Economic Issues 109

12 How the Multiple Sclerosis Organizations Can Help 119

Part IV Appendices

Appendix 1 Glossary 133

Appendix 2 General Resources 143

Index 157

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