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    Scooter Sagas: Coping with Ataxia
    Scooter Sagas: Coping with Ataxia
    Scooter Sagas: Coping with Ataxia
    Ebook146 pages2 hours

    Scooter Sagas: Coping with Ataxia

    By Tammy Lanning Schuman

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    About this ebook

    Author Tammy Schuman led an active, charmed life. She was healthy and worked as a registered nurse in a good career; she was able to run and travel, and she had a great family and friends. Her entire life changed, however, in 1996 when she was diagnosed with spinocerebellar ataxia, a progressive neurological movement disorder. Everything she had built her life on shifted. She still had great family and friends, but the rest was slipping away.

    In the Scooter Sagas: Coping with Ataxia, Schuman narrates her experiences by sharing her snarky emails, private journaling, website chatting, and public blogging. In this memoir, she describes the reality of living with ataxia and the ways in which it affects every aspect of her life. She also relays her motorized scooting experiences with Skeeter, the inanimate best friend who gives her the freedom to get outside and be more mobile.

    With humor, the Scooter Sagas: Coping with Ataxia provides firsthand insight into one womans battles with a movement disorder and her fight to maintain her independence and dignity.

    LanguageEnglish
    PublisheriUniverse
    Release dateMar 11, 2013
    ISBN9781475974492
    Scooter Sagas: Coping with Ataxia
    Author

    Tammy Lanning Schuman

    Tammy Lanning Schuman is a retired registered nurse who spent the last seventeen years of her career at the Oregon Health Sciences University School of Nursing. She lives in Lake Oswego, Oregon, with her husband of forty years, Earl. They have two children and four grandchildren. This is Schuman’s debut book.

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      Book preview

      Scooter Sagas - Tammy Lanning Schuman

      Copyright © 2013 Tammy Schuman.

      All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

      iUniverse books may be ordered through booksellers or by contacting:

      iUniverse

      1663 Liberty Drive

      Bloomington, IN 47403

      www.iuniverse.com

      1-800-Authors (1-800-288-4677)

      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.

      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.

      ISBN: 978-1-4759-7447-8 (sc)

      ISBN: 978-1-4759-7449-2 (e)

      Library of Congress Control Number: 2013902143

      iUniverse rev. date: 3/5/2013

      Contents

      Preface

      Acknowledgements

      Dedication

      Introduction

      Lessons Before Skeeter

      Lessons About Motorized Scootering

      Lessons About Traveling

      Epilogue

      Preface

      Who is Skeeter? Regaining mobility

      To celebrate our fortieth wedding anniversary, my spouse bought me a motorized scooter instead of diamond jewelry. Four wheels, a rearview mirror, a large basket and a big battery.

      As my Spinocerebellar Ataxia (SCA) progressed, I had to bite the humiliation bullet, not care what people thought (they may stare briefly, but they really do not think about a person with disabilities or impairments for long), or shut up and stay parked somewhere.

      After several rental trials, here’s Skeeter, my new inanimate best friend. I’m into personification and Skeeter is the name of one of my favorite characters in a book called The Help. She gave me freedom to get outside, join people as they walked, ran, went to museums and other public venues, without a manual wheelchair.

      Scooter-image.tif

      I was initially diagnosed with spinocerebellar ataxia in the late 1990s, came out to family and friends in the early 2000s and retired from nursing in 2003. We bought Skeeter in 2010. While a scooter may evoke images of speed and motorcycles, a motorized scooter is more like a motorized wheelchair. There is no speed involved. However, it does afford some independent mobility. A motorized scooter doesn’t replace my rollator/walker as it affords no exercise, no physical challenge, nor incentive to maintain muscle strength––that has to come from elsewhere. There are many occasions where some leg and upper body strength are required and I need to maintain that to even get out of a chair. What a scooter does do for me is vastly increase the range I can go and what I can participate in without mortal fear of falling. Since it doesn’t require another person to assist me, I can and do take off alone. However, at 5 MPH maximum speed, Skeeter and I are just not hard to catch.

      This book is a compilation of my snarky emails, private journaling, website chatting, public blogging and, finally, scooting experiences. My sister–in–law encouraged me to journal as a way of contending with my progressing ataxia, so I started there for feelings I wasn’t ready to share. My spouse shared some of my emails to family and friends and once Skeeter came into my life, I started the blog. Throughout the book, I refer to Spinocerebellar Ataxia (SCA) and ataxia interchangeably. For me, they are interchangeable. For those interested but unaffected, they are not. Just as not all dementias are Alzheimer’s, not all ataxias are SCAs. One can have ataxia or ataxic symptoms for many reasons, including Menière’s (inner ear disturbance), lack of sleep, abuse of alcohol or drugs, certain vitamin deficiencies, stroke or head trauma. Also, one can also develop the disorder of ataxia for many reasons (genetic acquisition, gluten allergy, infection, Friedreich’s Ataxia). Ataxia refers to a loss of coordination not due to muscle weakness. It often feels like walking on tennis balls. I developed my disorder due to a gene passed from the maternal side of the family. It is not important for everyone to make a distinction, as ataxias may look the same—my Spinocerebellar Ataxia is only one of many movement disorders (SCA, Parkinson’s, Huntington’s).

      Although I am computer and internet literate, I didn’t know what a blog was until two years ago. I soon realized it was a good vehicle for my angst and smart mouth–so began the Scooter Sagas. It was also time to come to grips with my two–sided nature (Pollyanna and the Wicked Witch) and get that back in balance.

      In spite of my hesitation, writing a book was just too tempting. My granddaughter thought it was cool and this seemed like the best opportunity I would ever get to be considered cool. Inadequate quantity of content was the biggest issue and my great American novel potential seemed more like a monograph than a book. However, life is short, c’est la vie…blah, blah, blah…so I decided to give it a shot.

      Acknowledgements

      This book started as a blog. It would have stayed that way if not for the family and friends that encouraged me and unknowingly, served as editors. For that, I will always be grateful. Of course, I always appreciated positive comments, but when someone said they had a better understanding of Spinocerebellar Ataxia (SCA) after reading the posts, I came to believe I had something to say to someone other than myself.

      I was fortunate to have two editors–daughter Heidi and spouse Earl. Heidi acted as my primary editor because 1) she is a good editor and writer 2) she not only understands me, but is not hesitant to hurt my feelings, if it means improving the book and 3) she has an eye for the big picture. Earl, my secondary editor, acted as the detail guy who, as a spouse, preferred not to hurt my feelings, but lasered in on any inconsistencies and areas of confusion.

      Dedication

      Sarah, Zoe, Kyle, Alexa

      Pretty much all the truth telling in the world is done by children.

      —Oliver Wendell

      Introduction

      It is Just a Blog

      That post was funny. You should write a book… friends would say. It was very flattering, but my usual response was that I would put whatever fit into the context of my motorized scooter and had humor potential into my blog. Skeeter provided me the impetus to write and a context for framing the ataxia. As a motorized scooter, she continues to be important to regaining my mobility.

      At the time and even now, a blog is a good format––amendable, readable and short. I enjoyed writing it and my family and friends enjoyed reading it. One of the best things about writing, email, etc. is that I can think about what I want to say, correct it, think some more and, when I am ready—publish or send. For someone who doesn’t think well on her feet (pun intended), that is a major positive. Made a mistake on the blog? Correct it and UPDATE. Hear from a confused reader? Clarify and UPDATE. Get a new thought? Add it and UPDATE. My target audience of friends and family was and remains intentionally small.

      Maybe writing a book would make sense at some point, but somethings just aren’t funny and I had no clue how to address them. A book would probably be called It’s Always Something because it is (Gilda Radner, in her book about dying of ovarian cancer, beat me to the title). Whether it is ataxia, cancer, heart disease, mental illness, orthopedic injury, job loss, it is all the same––loss of what you once were.

      I reached middle–age healthy and active—traveling, cycling, running marathons, when the shoe dropped. What I thought was premature, but normal, slowing down turned out to be the subtle onset of a genetically acquired Spinocerebellar Ataxia (SCA), Type 6. The good news is it is neither terminal nor painful. As far as progressive neurological disorders go, there are far worse. I just never planned to develop any neurological disorder, so this threw me for a loop and contending with difficulties has been, uh—variable.

      Spinocerebellar Ataxia (SCA) is uncommon and, consequently, may not be generalizable to other forms of chronic illness. That is not for me to decide. Perhaps some of the content will speak to someone’s experiences. Some may think it is

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