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    Managing Ms: Straight Talk from a Thirty-One-Year Survivor
    Managing Ms: Straight Talk from a Thirty-One-Year Survivor
    Managing Ms: Straight Talk from a Thirty-One-Year Survivor
    Ebook151 pages1 hour

    Managing Ms: Straight Talk from a Thirty-One-Year Survivor

    By Debbie Petrina

    ()

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    About this ebook

    Debbie Petrina walked into her doctors office in 1980 with strange symptoms. She was only twenty-five years old and terrified of what to expect; it was not until four years later that she was finally diagnosed with multiple sclerosis.

    Since then, she has faced a battle in living with the disease; even so, she continues to live and enjoy her life. In this inspiring account, she shares her personal experiences with MS and how she deals with the diseases devastating effects.

    If you think you might have MS, have been diagnosed with MS, work with MS patients, or have a family member or friend dealing with the disease, Petrina offers help. Youll obtain knowledge and guidance for handling symptoms; deal with the effects of MS on your daily life; manage emotions, depression, and cognitive functions; and approach issues such as long-term disability.

    Debbies commonsense approach to dealing with MS cuts through the mounds of information available today and packages it into a practical, easy-to-read resource. Take the fear out of diagnosis and learn how to effectively begin Managing MS.

    LanguageEnglish
    PublisheriUniverse
    Release dateDec 30, 2011
    ISBN9781462070503
    Managing Ms: Straight Talk from a Thirty-One-Year Survivor
    Author

    Debbie Petrina

    Debbie Petrina wrote her book, Managing MS: Straight Talk From a Thirty-One-Year Survivor, to help others dealing with Multiple Sclerosis manage and easily understand it. She wants to reduce the fear associated with the unpredictable course and symptoms of MS through her practical, knowledge-and- support handbook. Her website www.DebbieMS.com provides more informtion. Debbie Petrina has spoken to thousands of people suffering from multiple sclerosis on her own and as a volunteer for the National MS Society. She has been a: * Trained peer counselor by the National Multiple Sclerosis Society (NMSS). She counseled persons with MS for fifteen years for the Society, and has since continued to counsel other peers confidentially through referrals from acquaintances and personal health-care personnel. * Monthly group leader for the NMSS for eleven years. * Member of the chapter services committee for the Western Pennsylvania Chapter. * Frequent speaker to newly diagnosed groups; caregivers/family groups; medical staff on behalf of the NMSS. * Constant researcher of MS news, publications, research. So what she learned and how she manage(d) are not only from her personal experience of living with MS for thirty-one years; they also are a result of interactions with peers and persons associated with MS. Debbie earned her Bachelor of Science in Business Administration degree in 1976 from Duquesne University in Pittsburgh, Pennsylvania. She worked for two major banks for over ten years in finance, research, sales and management. These skills have been invaluable to her throughout the years as she researched, analyzed, and engaged herself with MS. Debbie currently counsels, writes articles, participates in MS events and social media to help others dealing with MS. Her website includes her MS Blog, news, events, self-help/educational videos, and articles/resources. Residing in Glendale, AZ with her husband, she is an avid reader, volunteer, and swimmer. Debbie's ability to effectively manage her MS enables her to enjoy travelling with her husband in their accessible RV.

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      Book preview

      Managing Ms - Debbie Petrina

      Contents

      Foreward

      Preface

      Acknowledgments

      PART I:

      WHO IS DEBBIE, THE AUTHOR?

      A Mouth and a Brain

      My Story

      Information about My Background

      My Ten Commandments

      PART II:

      WHAT SHOULD YOU KNOW?

      Newly Diagnosed?

      Doctors/Hospitals

      An Ongoing Grieving Process

      MS Symptoms—Overview

      The Heat Element

      Bad Days vs. Flare-ups

      Treatments

      PART III:

      WHAT CAN YOU DO?

      The Invisible Symptoms—You look so Good!

      Fatigue—Wipeout

      Vision Problems

      Internal Plumbing—Part I Bladder

      Internal Plumbing—Part II Bowels

      Sexual Dysfunction

      Spasticity, Ataxia, and Weakness

      Let’s Talk Walking Aids…

      Durable Medical Equipment

      Pain

      Pregnancy, Menses and Hormones

      Emotions, Depression, Cognitive Functions

      The Elephant in the Room—Suicide

      Long-Term Disability Insurance

      PART IV:

      WHAT ELSE IS HELPFUL TO KNOW?

      How to Deal with People

      How to Deal with a Person with MS

      Positives to having MS

      Personal Choices

      Final Words of Inspiration

      Resources

      Bibliography

      About the Author

      Debbie Petrina has written a remarkable book about her personal journey with MS in the hopes that her story and her thoughts will be helpful to others with MS. Her personal thoughts will be helpful to people with MS and their loved ones as they embark on their own journeys.

      –Barry A. Hendin M.D., Phoenix Neurological Associates

      "Managing MS: Straight Talk from a 31-Year Survivor provides practical and meaningful guidance for people living with MS as well as for their family and friends. In addition, caregivers and health care providers can learn ways to understand someone who has been diagnosed with MS. The information is candid and personal from Debbie’s experience living with MS for more than three decades."

      –Ellen Friedman, P.T., M.A.

      Debbie Petrina treats the subject with candor, and her no-nonsense style does not sugar-coat reality, but deals with it in an honest, up-front manner that MS patients, their friends, and their families will appreciate.

      –Rita Wilson, English teacher and writer

      This book is INCREDIBLE and easy to read. The clinical information and personal experience provided not only answers key questions but reassures readers that they are not alone.

      –Sandy Dow, Neuro-Trauma ICU RN, Phoenix, AZ

      Good common-sense advice; not preachy. Very user-friendly.

      –Jeffrey Fisher M.D., Consultants in Internal Medicine

      "This book is very enlightening and a must read for anyone with MS and those who care for someone with MS. When I was diagnosed with MS in 1991 I was in denial and didn’t know where to turn. The National MS Society in Pittsburgh told me of a support group for newly diagnosed MSers lead by Debbie Petrina. She is very knowledgeable in MS and made such a difference in my life; she can make a difference in yours. This is a book that you will both cherish and enjoy."

      –Jacqueline Dawso

      I wish I would have had a book like this to read years ago, from someone suffering from this disease. MS is very frightening and confusing. I have had MS for 23 years and still found it helpful in many ways.

      –Gerry Markle

      This book is dedicated to everyone in the world living with Multiple Sclerosis, their families, and friends.

      Foreward

      Debbie Petrina’s guidebook on Multiple Sclerosis is an inspirational, first-hand encounter of living with MS. Patients and physicians would benefit from this actual account of Debbie’s story. As a Nurse Practitioner, the book opened my eyes to the affects of the disease on my patients’ lives and their medical needs. This is not a textbook read.

      If you are a patient of MS, you would benefit from reading this book. You may laugh, cry, and come to terms with the current life of MS through Debbie’s eyes. I would highly recommend reading this wonderful, exceptional book to help guide any professional or patient through the incredible journey of the life of a person with MS.

      Debbie’s strength and courage with this disease should be an inspiration to continue the fight to survive MS.

      Diane L. Perry, NPC

      Consultants in Internal Medicine

      Glendale, Arizona

      Preface

      The brain and nervous system are extremely complex and complicated, and since multiple sclerosis is a disease of the brain and nervous system, there is no wonder why it is difficult to diagnose it, discover a cure for it, and know how to live with it. Until a cure is discovered or restorative abilities to damaged areas are found, it is paramount that a person with MS lives with their primary goal to prevent as much damage to the nervous system as possible. Someday a breakthrough will happen, but for those living with MS it’s not fast enough. In the meantime, there is still that dark, long tunnel of going through one’s life with the fear of not knowing what to do or expect next; and, how can I do it, and will I survive?

      This book is a true testament that a person can manage their MS and have quality of life while waiting for that breakthrough day of discovery. I get up close and personal when I share my experiences and expertise in the chapters that follow. Living with MS is frightening; one of my objectives is to help reduce the fear. Living with MS is not easy and is very complicated in many ways: the symptoms, the treatments, the medical professionals, relationships with people, the emotions, and the advancing disabilities. Thus, another objective of mine is to offer guidance and tips for managing these things in a manner that is easy to understand.

      I talked to thousands of persons and professionals both with and without MS about these things during my fifteen years of volunteer work with the National MS Society, and continued afterward until present day. I have read books, articles and other information about MS over the past three decades and, of course, I have experienced it firsthand myself.

      Awareness of multiple sclerosis has exploded since the onset of my symptoms in 1980. Yet, I believe understanding MS is an area that can be enhanced for others involved with a person with MS. While it is estimated that 400,000 persons in the U.S. have MS (Source: National MS Society), many others without it also have to live with it or work with it. It is my hope that family, friends, and health professionals will obtain guidance and knowledge as well from this compact resource, Managing MS.

      Acknowledgments

      Ellen Friedman, my physical therapist for the past four years, thank you for your friendship, all the help you have personally given me for managing my MS, and the thorough review and recommendations of the draft of this book. Rita Wilson, my good and supportive friend since before my MS began, and an English teacher with a Masters in English, thank you for your extensive editing review and constructive critique of my manuscript. Lynn Franklin, my friend from childhood and now an accomplished writer, thank you for introducing me to the world of publishing. Jeffrey Fisher, M.D., many thanks for your complete review, suggestions and corrections to my book draft and being my incredible internist. Barry Hendin, M.D., thank you for your review and thoughts of my book, as well as all the support you give me as my wonderful neurologist. I would also like to extend my sincere appreciation to those that read my manuscript and gave me their honest feedback: Diane Perry, NPC (Nurse Practitioner at Consultants in Internal Medicine); Sandy Dow, (Neuro-Trauma ICU RN); Anne Mageras (President, Western PA Chapter of the NMSS) Ellen Langas (President and Founder, Nousoma Communications, Inc.); Gerry Markle (person with MS); Jacqueline Dawso (person with MS); and John Furjanic (Chief Operations Officer, RMEnergy, Inc., and my brother.) I am grateful to all of the persons with MS, The National MS Society, and others I have spoken to about MS, as you have helped me as much as I helped you. Finally, thank you to my mother and stepdad, Helen and Dr. Leland Schlabach for the support and encouragement you gave me during the process of writing this book; and my sister, Suzi, my loving husband, Den and son, Chad for always being there for everything.

      PART I:

      WHO IS DEBBIE, THE AUTHOR?

      A Mouth and a Brain

      (May 18, 2011)

      In 1980, thirty-one years ago, I walked into a neurologist’s office with weird things happening to me. Four years later, my diagnosis was confirmed.

      I have a mouth and a brain. I have always said that I use them both to get what I need or want. Through the years as I became more disabled, I have used my mouth and my brain to figure out ways to manage my life and stay as independent as possible.

      Today I went to Best Buy to get a wireless mouse for my notebook. I called the store first to make sure they had what I wanted and asked them to hold one for me at customer service. When I got there, I called them and explained that I had driven with hand controls since I don’t walk and didn’t have my wheelchair with me. Could someone bring it out to the car for me?—I had the exact amount in cash for payment.

      The clerk explained it was store policy that employees were not allowed to leave the store. This was the first time that this had ever happened to me; when I had done this at other places I was always accommodated. Hmm—plan B. Okay, not to worry, I said. I will

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