'Til Death Do Us Part: My Life with Multiple Sclerosis

By Winifred Howard

Early in the diagnosis of multiple sclerosis, Winifred felt defeated. After numerous hours researching the disease and its symptoms, she began to understand the progression of multiple sclerosis. If she hoped to live a full life with this disease, Winifreds attitude toward the condition would need to change. Keeping that in mind, she adapted pieces of her life to enhance her mobility and make her daily life less difficult to navigate.

She approaches the subject in a way that makes the reader feel engaged as she is frank about her feelings, the disease that she calls the monster, treatments currently available, and the gaps in the medical care she received. Her research sent her approach to fighting this disease into an entirely different direction.

Winifred offers her readers a platform to discuss their own journey with multiple sclerosis by giving them an e-mail address and her contact information for them to be able to reach out to her on Twitter.

Knowing that there is currently no cure, Winifred refers to multiple sclerosis as her life partner. Her new outlook in life is inspiring. This is the biggest battle of her life, and Winifred intends to win!

• Language: English
• Publisher: AuthorHouse
• Release date: Jul 11, 2017
• ISBN: 9781524698393

Winifred Howard

Winifred Howard was born in a small town in central Pennsylvania where she continues to reside today. She is a retired Therapist who earned a certification in grief therapy. She enjoys spending time with her family, tending her flower gardens, cookouts and pool time in the back yard, and holiday time with her family. Winifred allows the readers to follow her as they join her journey every time! When she was diagnosed with a life altering disease she described it as the biggest battle of her life, but she now realizes that death is bigger! As with her previous book, TIL DEATH DO US PART My life with Multiple Sclerosis, Winifred aspires to help others who are dealing with a similar situation as she leads them through her journey. As always, Winifred writes from the heart about true experiences in her own life in a way that allows us to feel all that she is experiencing. It is her hope that she might be able to touch her readers who are facing the death of a loved one so that they may feel less alone in this plight that is so overwhelming to all who endure its wrath.

Book preview

‘Til Death Do Us Part

My Life with Multiple Sclerosis

Winifred Howard

38359.png

AuthorHouse™

1663 Liberty Drive

Bloomington, IN 47403

www.authorhouse.com

Phone: [phone]

© 2017 Winifred Howard. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 07/10/2017

ISBN: 978-1-5246-9840-9 (sc)

ISBN: 978-1-5246-9839-3 (e)

Any people depicted in stock imagery provided by Thinkstock are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Dedication

This book is dedicated to my family without whose support the bumps in the road would have been impossible for me to navigate. I would also like to thank my husband, Dale, for putting up with me all of the times I have tantrums and find myself crying on his shoulder as a result of my level of frustration with where I am on any given day in the process of this disease.

I also want to thank God, because without his grace, this book simply would not have been possible! God brings me through every valley and leads me out of the darkness; sometimes he carries me out; the fact is that he brings me back in to the light.

I am not forgetting all of the MS ARMY who fights this battle beside me every single hour of every day. You have listened to me rant on Twitter and hearing your personal battles with the disease somehow empowered me to share my own story. It is because you have shared your struggles that a portion of the profits from book sales is being given to charity to provide devices to people with Multiple Sclerosis.

I love you all. Thank you!

Winnie

Preface

This book is intended to help individuals diagnosed with multiple sclerosis and other life altering debilitating conditions as well as the loved ones that struggle by their side. I have struggled with multiple sclerosis for the past seven years and it has been a roller coaster ride that at times felt like it was leading to the bowel of Hell. Experiencing the progression of the disease has been challenging but I have overcome some of the obstacles associated with this unforgiving disease and I am sharing them to help others better cope with what might be occurring in their lives.

In the early stage of the disease I was able to fake it and at that time nobody knew I was afflicted. The first eighteen months or so were fairly stable. During that time I got married, took a position as an Adjunct Instructor with a private college teaching a Master’s Level program, and walked thirty-nine miles a week with my daughter. Life was good and I was feeling alive and becoming fit. Life had a positive spin on it and the future was looking great! At that time, I had no idea what life obstacles were on the horizon. If this sounds familiar I urge you to keep reading. At the three year mark my symptoms worsened and my diagnosis changed. Everything seemed to unravel during the next two and one half years and I felt as though multiple sclerosis was drawing my life out of me with each breath I drew in. I began avoiding people and situations where there might be a crowd or children. With my sensory issues, too many people talking in a room sounds like thunderous roaring and I often need to excuse myself from the situation.

I no longer enjoy trips to the mall for many reasons; crowds, noise levels, shelves and racks in stores that are to close together and stores are not conducive to a good experience for me. My friends and family stopped asking me to engage in activities with exception to gift giving holidays, and while it was a painful experience I understood that I had become the wet blanket.

My husband takes up the slack. We go shopping, walking, camping, and kayaking. My plan is to do what I can for as long as I am able. I cook and bake, do most of the shopping, and have picnics and parties at various times during the year as I am able. I will be taking our dog to a six week training program to help her gain skills needed to help me and when that is done, Dale and I will be taking a hot air balloon ride over the valley.

Knowing how difficult life’s journey with multiple sclerosis has been for me and the people I care about, I want to share some pearls of wisdom with the caretakers and loved ones out there. Being told that someone you care about has such a horrible disease is hard to comprehend. You probably have many questions about the particulars of the disease; how did they get it, is it contagious, how long will they be sick, what are the limitations of the disease on my loved one, will they die from the disease, and the list goes on. Let me answer some of those points now. One of my first pieces of research was where it came from and how I got it. All information indicated that there is no definitive answer to where multiple sclerosis comes from, it just comes and more women than men are affected (we make it through childbirth, we got this).

It is not contagious and from what I can tell, it is not hereditary even though offspring have a higher likelihood of the disease (2.5%). Multiple sclerosis has no cure at the time of this publication, but researchers are working diligently to find one. While multiple sclerosis is not fatal, some research suggests that someone with the disease might have a life span that is seven years shorter than the average female, somewhere around seventy-six years. As for limitations, it is totally dependent on the level of severity of the disease the person experienced and in my personal belief, the mindset of the diagnosed person.

I imagine that pieces of my journey might overlap with your own journey. If someone you love has been diagnosed or is in the pre-diagnosis phase of testing and a multitude of doctor’s visits there are things you should know. First and foremost, except them as they are and do not make every conversation with them center around the disease and the things you heard will cure it (it cannot be cured).

Know that while you are trying to wrap your head around this disease, the diagnosed person has already begun to research in hopes that a cure can be found or maybe they are looking for a shred of information that can prove it is a misdiagnosis and they can be cured. I assure you they are struggling behind closed doors and it is likely that they have cried enough tears to form a large body of water. What they need most is support, not questions or suggestions. You must remember that at the end of the day you are able to go home and get away from it, but for the individual with multiple sclerosis, it haunts their dreams (if it lets them sleep at all).

You are not the one who wrestles with this monster twenty-four hours a day, your loved one is! Do not pity them and refrain from offering advice, which is what doctors and support groups are for. Just be a friend, be a sibling, be a parent, and be a daughter/son. Keep in mind that the diagnosed person is likely researching the disease, drug trials, and efficacy of drugs already on the market.

From my own perspective, I have turned this disease inside out and viewed it from every angle possible. I know what I am willing to do and I know where that line is drawn. What I am not interested in is being a lab rat for drugs or procedures of any kind. It is my own personal viewpoint that using the drugs in trial is like drinking from a bottle clearly marked POISON and waiting to see what happens.

I do not take any medicine until it has five years on the market so I can research everything about it. Only then will I give it a shot but if I experience a side effect I am immediately on phone with the doctor and the drug is put on my adverse reaction list. After you follow my journey, please be in touch with me. I would love to hear from you. My information appears later in the book.

Contents

Chapter 1 - Fighting Exhaustion

Chapter 2 - Hospital Visit from Hell

Chapter 3 - Room 436

Chapter 4 - Referral to Adult Neurology

Chapter 5 - Life before Multiple Sclerosis

Chapter 6 - Grieving the Death of the me I Remember

Chapter