Traveling with Alzheimer’s: Year Two

By Brian Scott Edwards MD FNLA

I was diagnosed with Alzheimer’s Disease in December 2017.
I published Waiting For When I forget I have Alzheimer’s YEAR ONE in February 2019.
This new book: Traveling With Alzheimer’s YEAR TW0 was finished in December 2019.

I am presently working on the YEAR THREE BOOK and should finish it in December 2020.

I believe the reader will be surprised by my disease progression over the first two years.
I clearly document how the diagnosis was made in the YEAR ONE book
In this second I wanted to demonstrate that people with Alzheimer’s can travel.
I encourage people to have fun in the early stages of their disease rather than struggle trying to find a cure.
I myself am in a non-treatment trial. I write about getting my second round of scans in YEAR TWO. I am not told the results of these tests. I am donating my brain to the trail. It’s all about paying it forward.
I review the recent major drug trial failure and articles and books about Alzheimer’s.
I try to break up the sober information with fun information about my trips.
I have 5 cruises planned for YEAR THREE so stay tuned.
You can read about it in real time on my blog.

meandgin.blogspot.com

Or follow me on twitter on

@brianedwardsMD

• Language: English
• Publisher: Xlibris US
• Release date: Jan 31, 2020
• ISBN: 9781796085983

Brian Scott Edwards MD FNLA

Brian Edwards MD has passed boards in Obesity, Lipidology, Internal Medicine, Geriatric Medicine and Infectious Diseases. He retired from the practice of medicine in 2009 to travel with his wife. He has written books on Cholesterol treatment, Diet while traveling, and Obesity treatment. I am waiting till I forget I have Alzheimer's disease is his fifth book. He went to Stuyvesant High School and Brooklyn College in NYC. He graduated from the Autonomous Universidad de Guadalajara and did his Internal Medicine Residency at Brookdale Hospital Medical Center. Later he did a fellowship at Kansas University Medical Center in Infectious Disease.

Book preview

Copyright © 2020 by Brian Scott Edwards, MD, FNLA

Library of Congress Control Number:       2020902073

ISBN:              Hardcover              978-1-7960-8600-3

                        Softcover                978-1-7960-8599-0

                        eBook                     978-1-7960-8598-3

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

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 Getty Images are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

Rev. date: 01/31/2020

Xlibris

1-888-795-4274

www.Xlibris.com

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Dedicated to Paul A. Elliott, DO, PA, the first neurologist who diagnosed my Alzheimer’s and started me on Namzaric. He also gave me hope that two of his patients will do well two years later on the medications. His prediction proved to be true.

The self in dementia is not lost, and can be reached with care.

—Muireann Irish

Who wants to live forever?

—Quote from a Queen song

CONTENTS

Foreword

Introduction

Chapter 1     Review of Pat Summitt’s Book Sum It Up

Chapter 2     My Travels Begin

Chapter 3     Australian Circumnavigation

Chapter 4     Back in Kansas

Chapter 5     Marital Humor in Coping   with Alzheimer’s

Chapter 6     New Hope

Chapter 7     One Step Backward, One Step Forward

Chapter 8     Exercise vs. Drugs to Treat Obesity

Chapter 9     A Moment of Enlightenment

Chapter 10   I Got a Neurologist in My Town

Chapter 11   Mindfulness

Chapter 12   I Posted My Diagnosis on Twitter

Chapter 13   Major Drug Trial Fails

Chapter 14   Email to My Friends

Chapter 15   How Alzheimer’s Patients   Cope with Trial Failures

Chapter 16   How to Deal with a Drug Trial   Failure After Five Years?

Chapter 17   Houston, Texas; Obesity Conference

Chapter 18   Online Mental Test Follow-Up

Chapter 19   The Tipping Point of Information

Chapter 20   Memory Palace

Chapter 21   Nostrums

Chapter 22   Very Embarrassing Moment

Chapter 23   My Second and Third Memory Palaces

Chapter 24   Review of Moonwalking with Einstein

Chapter 25   The Last Remaining Seven   Wonders of the World

Chapter 26   Venice to Barcelona Cruise

Chapter 27   Off Statins

Chapter 28   First Black Eye in My Life

Chapter 29   KUMCR Trial Testing No. 2

Chapter 30   An Unexpected Optimism and Happiness

Chapter 31   The Pursuit of Happiness

Chapter 32   Is End-Stage Alzheimer’s a State of Grace?

Chapter 33   When Will I Realize Loss   of the Sense of Self?

Chapter 34   Restarted Statins

Chapter 35   Alzheimer’s vs. Asperger’s

Chapter 36   Reviewing Mueller Report

Chapter 37   Follow-Up Visit with My   Florida Neurologist

Chapter 38   I Become More Hopeful

Chapter 39   A Trying Task

Chapter 40   Pursuing a Life of Joyous Fulfillment

Chapter 41   Supreme Test of Traveling   with Alzheimer’s

Chapter 42   Crash and Burn from Stress

Chapter 43   Boredom and Stress

Chapter 44   You Must Suffer

Chapter 45   Does Suffering Have a Positive Side?

Chapter 46   Evolution of Understanding My Future

Chapter 47   Back in Topeka After Eighty-Five Days

Chapter 48   Anger: The Ugly Side of Alzheimer’s

Chapter 49   The Topeka Theory of Alzheimer’s

Chapter 50   Review of The End of Alzheimer’s

Chapter 51   A Busy Day of Chores

Chapter 52   Diet

Chapter 53   The House Intelligence Committee

Chapter 54   Holiday Fun in November

Chapter 55   End of Year Two

Epilogue

FOREWORD

This book offers a captivating peek into the life of its author, Dr. Brian Edwards. It will not take long for the reader to recognize Brian not only as a fascinating individual in his own right but also that there is a unique aspect that makes this such a unique and rewarding read. Brian carries a diagnosis of Alzheimer’s disease. Yes, this is the same Alzheimer’s disease that afflicts such a large part of our society and that is feared by so many. Rightly so because this malady threatens to reduce the essence of ourselves—the same disease that until recently many afflicted persons and their families sought to hide from others because of the stigma of helplessness and dependence the name conjures.

While its passage is typically not apparent on a day-to-day or week-to-week or maybe even month-to-month basis, it is always there in the background, determined over adequate time to continue its march. A diagnosis comes with the prediction that things done successfully in the past become more challenging and that the afflicted person’s world becomes gradually smaller.

But perhaps this does not have to be an absolute, or at least a linear, outcome. So much of how we face our daily lives is based on perception. In the chapters that follow, Brian shows us that even in the presence of Alzheimer’s disease, controlling perceptions of ourselves and what we can accomplish can in turn shape our experiences and accomplishments. This book will have you join Brian as he navigates the second year of his Alzheimer’s disease diagnosis. Through pages that are part blog, part diary, and part philosophical musing, the author pulls you into a journey notable for moments of triumph and occasional setbacks. In his indefatigable way, he makes the novel case that Alzheimer’s cannot beat Brian; only Brian can beat Brian. It appears that whatever life throws at him, he consistently wins by simply deciding not to lose.

This book is the sequel companion to a prior piece that details his journey through the maiden postdiagnosis year. Here, Brian raises the question and hopes that there will be a third one. As to whether this book will next year become a prequel to Year Three, well, I wouldn’t bet against Brian. So ride with him as he travels over multiple continents, rises to many challenges, gets computer scammed, acquires an impressive black eye, and ponders another clinical trial failure but never gets down. What is he chasing—or does that even matter if he is simply loving the journey? Full of wisdom, wit, and insight, this book will keep you thinking long after you’ve put it down.

—Russell Swerdlow, MD

INTRODUCTION

On August 15, 2016, Kansas State required that I participate in the Colorado Physician Evaluation Program (CPEP) to reactivate my license after retiring in 2009. The result of the one-day-long exam reported I did poorly on my cognitive exam, especially math, and was advised by CPEP to have further evaluation for my poor result.

On December 15, 2017, sixteen months later, my diagnosis of Alzheimer’s was made official. On December 15, 2019, I had known I have cognitive problems for twenty-eight months.

Now I am doing great, and I write this to give people hope.

I have completed Year Two of my Alzheimer’s series. I hope Alzheimer’s patients can take comfort that the diagnosis is not as dreadful as usually depicted. I have gotten past the grief of my diagnosis. My wife and I have planned many major trips to enjoy our life. This goal gives me purpose and happiness. I try to tweet and blog most days. You can look up my blog and see what I was able to write over this two-year period since I learned I had Alzheimer’s. My Twitter account is @brianedwardsmd.

The title of this book is Traveling with Alzheimer’s Year Two. I read in Coach Pat Summitt’s book that people told