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Fighting for My Life: How to Thrive in the Shadow of Alzheimer’s

Fighting for My Life: How to Thrive in the Shadow of Alzheimer’s

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Fighting for My Life: How to Thrive in the Shadow of Alzheimer’s

Lunghezza:
278 pagine
3 ore
Pubblicato:
May 7, 2019
ISBN:
9780785222149
Formato:
Libro

Descrizione

A practical, helpful guide on how to fight back against Alzheimer’s disease—with expert medical advice & one woman’s inspiring personal journey.

Jamie Tyrone was forty-nine years old when she learned she had a 91% chance of getting Alzheimer's disease—by accident through genetic testing. She was shocked, but after an initial bout with depression she decided to take action rather than concede defeat.

Jamie teamed up with Dr. Marwan Sabbagh, a renowned neurologist, and together they created a resource detailing not just Jamie's experience, but expert medical advice for anyone facing the disease.

This book is a practical, helpful guide for those who know they’re at greater risk of contracting Alzheimer’s disease. Readers will:

  • Gain expert medical advice from Dr. Sabbagh on how to fight back against the disease
  • Discover the pros, cons and possible dangers of genetic testing
  • Witness a first-hand account of how to deal with the shadow of Alzheimer’s disease through Jamie’s story

If Alzheimer’s has affected your life, or the life of someone you know, this book is for you. You’ll be armed with information, and ready to tackle Alzheimer’s head-on.

Pubblicato:
May 7, 2019
ISBN:
9780785222149
Formato:
Libro

Informazioni sull'autore

Jamie Tennapel Tyrone es una enfermera matriculada jubilada y presidenta de B.A.B.E.S., «Vencer el Alzheimer Abrazando la Ciencia». Ella es miembro fundador de WomenAgainstAlzheimer's (WA2) [Mujeres contra el Alzheimer], y fue honrada con un lugar en «El gran muro del empoderamiento», de Maria Shriver. Jamie defiende con toda diligencia la búsqueda de una prevención o cura de esta enfermedad, participando ella misma en la investigación e incentivando a otros a prestarse para ensayos clínicos. Su cautivante historia ha sido tomada por el Washington Post, el New York Times, el San Diego Union Tribune y apareció en una columna de PBS NewsHour con Judy Woodruff. El galardonado documental de CNN, «Filling the Blank» y el de la BBC, «Horizon: Curing Alzheimer's», destacaron el arduo peregrinaje de Jamie.

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Fighting for My Life - Jamie TenNapel Tyrone

Praise for Fighting for My Life

"For the millions of Americans with Alzheimer’s Disease and the millions more who care for them, there has been little hope and much suffering. Until now. Fighting for My Life is a remarkable story of hope and possibility for preventing and overcoming this dreaded disease. Dr. Marwan Sabbagh, who leads Cleveland Clinic’s efforts to beat this disease, maps out science-based strategies to prevent this disease and improve brain function (for those at risk and the rest of us). If you are a caretaker or at risk for dementia, or if you are anyone with a brain, you must read this book."

—MARK HYMAN, MD, DIRECTOR OF THE CLEVELAND CLINIC CENTER FOR FUNCTIONAL MEDICINE AND NEW YORK TIMES BESTSELLING AUTHOR OF FOOD: WHAT THE HECK SHOULD I EAT?

"To test or not to test is the issue. Fighting for My Life is a testament to what happens when someone owns their Alzheimer’s risk profile and then teams up with top researchers like Marwan Sabbagh, MD, by signing up for clinical trials. Science needs millions more just like Jamie Tyrone in order to get to a cure."

—MERYL COMER, AUTHOR OF THE NEW YORK TIMES BESTSELLER SLOW DANCING WITH A STRANGER: LOST AND FOUND IN THE AGE OF ALZHEIMER’S AND COFOUNDER OF WOMEN AGAINST ALZHEIMER’S.

"Jamie Tyrone and Dr. Marwan Sabbagh have written an informative and inspiring book to empower those who are exploring their options for genetic testing, deploying strategies for better brain health, and sharing the exciting future of finding a prevention or cure. The only way to eradicate the devastating effects of Alzheimer’s Disease is through research and participation in clinical trials. Jamie’s courage to share her raw and candid journey of knowing her 91 percent lifetime genetic risk of getting AD, choosing to demystify her selfless experience as a research volunteer, and encouraging others to follow in her footsteps is brave and commendable. Fighting for My Life is a compelling must-read."

—JAMES KEACH, AWARD-WINNING DOCUMENTARY PRODUCER OF GLEN CAMPBELL: I’LL BE ME AND TURNING POINT

"Jamie Tyrone and Dr. Sabbagh’s Fighting for My Life punctuates the strength of advocacy to meet the needs of researchers in the quest for finding prevention or a cure through pharmaceutical intervention, early diagnosis, and brain-health strategies. Advocacy does not happen in a vacuum, and this book highlights the true power that using one’s voice can have on bringing about positive change in our society. As a supporter in the fight against Alzheimer’s Disease, I admire Jamie’s dedication to advocacy and Dr. Sabbagh’s passion to find a cure."

—REPRESENTATIVE JOHN GARAMENDI

Participants in clinical research are our heroes. As researchers, our efforts to get new medicines to people around the world could never be achieved without those like Jamie who are willing to join us on the journey. Especially in the case of Alzheimer’s Disease, we frequently hear that participating in a clinical trial is empowering and brings hope. We are so thankful to Jamie and Dr. Sabbagh for joining forces to tell this very important story about courage, initiative, and a fighting spirit.

—PHYLLIS BARKMAN FERRELL, PHARMACEUTICAL EXECUTIVE

There isn’t enough runway for me to express my gratitude to Jamie Tyrone and Dr. Sabbagh for writing this book, or to convey its importance to the fabric of discussions regarding the responsible delivery of genomic medicine. This book should be a guidepost to those who are either considering or ordering predictive genetic testing for Alzheimer’s Disease. Jamie is one of many I have heard from who felt emotionally blindsided by their genetic test results because they didn’t have the anticipatory guidance to consider how results would make them feel, or the psychiatric and practical struggles they may face. This book has earned its rightful place as one of many to enhance our understanding and guide our individual and collective choices.

—SUSAN ESTABROOKS HAHN, MS, LCGC, PAST PRESIDENT OF THE AMERICAN BOARD OF GENETIC COUNSELING AND COAUTHOR OF GENETIC COUNSELING AND TESTING FOR ALZHEIMER DISEASE: JOINT PRACTICE GUIDELINES OF THE AMERICAN COLLEGE OF MEDICAL GENETICS AND THE NATIONAL SOCIETY OF GENETIC COUNSELORS

"Fighting for My Life is a great read. Jamie Tyrone is a champion and a warrior for the millions of people now living with Alzheimer’s and future generations who will face this devastating disease. By telling her story honestly, and by courageously volunteering for a clinical trial, Jamie shows the incredible power of one person in the fight for a treatment or cure, and better brain health for all."

—GEORGE VRADENBURG, CHAIRMAN AND COFOUNDER OF USAGAINSTALZHEIMER’S

"In Fighting for My Life, Jamie Tyrone gives a grounded, hopeful, and often humorous account of her diagnosis and commitment to fight back against Alzheimer’s. The only way to discover treatments and cures for this insidious and pernicious disease is for heroes like Jamie to volunteer for therapeutic clinical trials. Jamie is performing an incalculable service by sharing her experience as a clinical trial participant. Combining Jamie’s personal journey with Dr. Marwan Sabbagh’s command of the science and the critical importance of volunteering for Alzheimer’s-related trials gives the reader an inspiring and much-needed understanding of one the greatest challenges facing our society today: what it will take to find a cure for Alzheimer’s."

—JOHN DWYER, PRESIDENT OF THE GLOBAL ALZHEIMER’S PLATFORM FOUNDATION

"Rare is the opportunity to delve into the topic of Alzheimer’s disease from two different perspectives at the same time. For Jamie Tyrone, the unexpected trauma of finding out she is genetically predisposed to Alzheimer’s, and for Dr. Marwan Sabbagh, the insight he’s gained from years of research and seeing patients. You may expect their stories to lead to the doom and gloom tale one is often given with anything related to Alzheimer’s, but in this case, we are inspired. Tyrone transforms her life to become an advocate, and Sabbagh enlightens us on why there is hope from the medical perspective. If you are one of the millions impacted by Alzheimer’s Disease, don’t miss the opportunity to read Fighting For My Life."

—DEBORAH KAN, FOUNDER AND EXECUTIVE EDITOR OF BEING PATIENT, AWARD-WINNING NEWS ANCHOR AND JOURNALIST, AND FORMER EXECUTIVE PRODUCER AT THE WALL STREET JOURNAL

© 2019 Jamie TenNapel Tyrone and Marwan Noel Sabbagh, MD

All rights reserved. No portion of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means—electronic, mechanical, photocopy, recording, scanning, or other—except for brief quotations in critical reviews or articles, without the prior written permission of the publisher.

Note: some names have been changed throughout this manuscript.

Published in Nashville, Tennessee, by W Publishing, an imprint of Thomas Nelson.

Thomas Nelson titles may be purchased in bulk for educational, business, fund-raising, or promotional use. For information, please e-mail SpecialMarkets@ThomasNelson.com.

Any Internet addresses, phone numbers, or company or product information printed in this book are offered as a resource and are not intended in any way to be or to imply an endorsement by Thomas Nelson, nor does Thomas Nelson vouch for the existence, content, or services of these sites, phone numbers, companies, or products beyond the life of this book.

Epub Edition March 2019 ISBN 9780785222149

ISBN 978-0-7852-2215-6 (eBook)

Library of Congress Control Number: 2018911311

ISBN 978-0-7852-2155-5

Printed in the United States of America

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Information about External Hyperlinks in this ebook

Please note that endnotes in this ebook may contain hyperlinks to external websites as part of bibliographic citations. These hyperlinks have not been activated by the publisher, who cannot verify the accuracy of these links beyond the date of publication.

To my mother, Suzanne. I continue the fight in your memory and with your unconditional love, strength, and humor to sustain me.

—Jamie Tyrone

I dedicate this book to the families and caregivers of my patients. They taught me what love, patience, perseverance, and compassion look like in the face of enduring stress and adversity.

—Dr. Marwan Sabbagh

Contents

Foreword

Introduction

Chapter 1: A Question of Balance

Chapter 2: The Devastating News

Chapter 3: Adventures of a Lab Rat

Chapter 4: The ABCs of ALZ

Chapter 5: The Genetic Puzzle of AD

Chapter 6: To Test or Not to Test

Chapter 7: Don’t Forget the Other Tests

Chapter 8: The Real Risks of Alzheimer’s

Chapter 9: Out of the Mouths of B.A.B.E.S

Chapter 10: Becoming a Caregiver

Chapter 11: Protecting Yourself Against AD, Part One: Diet

Chapter 12: Protecting Yourself Against AD, Part Two: Physical Activity

Chapter 13: A World Without Alzheimer’s? Yes!

Chapter 14: Hear Me Roar

Appendix 1

Appendix 2

Resource Guide

Notes

Acknowledgments

About the Authors

Foreword

Have you ever wondered about your genetic risk for Alzheimer’s disease?

Or would you rather not know?

Either way, I hope you won’t be blindsided by the news, as Jamie Tyrone was when she took a genetic test in an effort to learn her predisposition for a totally unrelated condition. Her accidental discovery of a high risk for Alzheimer’s was traumatic, but it propelled Jamie to a journey of self-discovery—a journey that has resulted in this book.

And make no mistake: this book should change your life. If it doesn’t, you either didn’t need to read it because you are diligently making all the right choices and enjoying them, or because you just don’t understand how much control you have over your brain’s long-term health.

Thankfully, Dr. Sabbagh and Jamie know that oftentimes knowledge isn’t enough. As you read, you’ll laugh, cry, and experience the anger and other raw emotions Jamie experienced once she truly understood the risks involved for her future. You can’t help but connect with Jamie as you read her story—and you’ll rejoice when you see how that story led her to Marwan Sabbagh, MD, the person I consider to be the go to doc when it comes to treating and researching Alzheimer’s disease and other forms of dementia.

While Alzheimer’s and all the dementias can be devastating to individuals and their families, the good news is that you can take actions now that will radically delay or maybe even stop you from developing the condition. The double-4 genotype that was so devastating to Jamie years ago may not have to be so devastating in today’s world.

That’s the incredible message of this book: you have power. You can change your future.

As Dr. Sabbagh and Jamie Tyrone make clear, you have a great chance to change which of your genes are turned on and which are not. Incredibly, you have the ability to change your family history going forward. In addition to Jamie’s story, this book will help you by detailing the science behind how to make those choices that will radically diminish your future risk for dementia.

That’s where Dr. Sabbagh’s influence is critical within these pages. Independent of and irrespective to your specific genes, he describes at least ten choices you can make that will delay or diminish the onset of dementia. These ten choices are important for all of us, given that dementia risk increases the longer we live. And all of us are living longer. In fact, you are likely (very likely as we move into the 2020s) to live past eighty-five—the age when a third of us develop dementia. Thankfully, while medical science is enabling us to live longer, it also, with the help of great scientists such as Dr. Sabbagh, is enabling us to make choices that make dementia much less likely.

As you’ll see in these pages, those choices can be as simple as routine stress management; doing specific physical activities and specific brain games; having lots of friends you rely on and associating with them frequently; avoiding toxins such as mercury and tobacco; avoiding unforced errors such as not wearing a helmet when skiing; making diet choices such as ensuring adequate brain fats, coffee, nuts, and chocolate; and the easiest choice of all, taking some especially helpful supplements. Dr. Sabbagh sheds light on these choices and many others you can make right now to delay or diminish dementia.

Having these choices is a wonderful gift. But be aware there is a paradox connected to them—having a choice doesn’t always lead to better decisions.

For example, you would think that having an increased risk of a disease such as Alzheimer’s would lead a person to make better choices for preventing that disease. But that’s not always the case. As you’ll see in Jamie’s emotional and engaging story, things get complicated. Fear must be overcome.

I’m grateful for the choices Jamie has made in recent years to fight back against the shadow of Alzheimer’s—to fight not only for her own future, but for yours as well. I’m also grateful for the contributions of Dr. Sabbagh both to this book and to our general knowledge of the science between the important choices described in these pages.

So please take advantage of these pages. If you want to understand the science behind Alzheimer’s and other forms of dementia, this book is for you. If you want to understand the choices you can make to delay or work toward preventing the onset of such dementia, this book is for you. And if you are interested in a powerful and emotional story of hope, this book is certainly for you.

Before I close, I want to make a special mention of the sections in this book written specifically for caregivers. I have seen the way dementia ravages not just individuals, but whole families. I’ve watched the difficulty of those struggling with caregiving. This book makes that easier, which is an incredible contribution.

I’m not surprised by that contribution, of course. The Cleveland Clinic’s Lou Ruvo Center for Brain Health—led by Dr. Sabbagh—was founded by friends of a man who watched his torment as he cared lovingly and consistently for his father. Though the process took a toll on him, he recovered with the help of science, his choices, and his family and friends. Jamie and Marwan point out that up to 40 percent of caregivers die prior to the ones they are caring for. Thus, caregivers need to make great choices and care for themselves too.

As you’ll see, Jamie and Marwan not only reveal the secrets of caregiving for a person entering and living with dementia (the caregiver and the patient both live with dementia), but also how to minimize the risks to the caregiver and improve the care of the loved one in the process. Let me repeat—this section is outstanding. It’s the best material on caregiving I’ve seen in any book on Alzheimer’s or the dementias, and it’s especially important if the caregiver is expected to help both himself and the one cared for escape the ravages of dementia.

And you can escape. That’s the power and knowledge this book puts in your hands.

Finally, don’t just read this book. Take action. Make the choices Jamie and Marwan have shared in these pages. Those choices will make you a better caregiver, yes. But those choices may keep your loved ones from ever having to be a caregiver. That’s exactly what’s at stake.

—Dr. Michael Roizen

Introduction

Where was she?

Where was Grandma Neva?

I scanned the room, searching through my ten-year-old eyes for this woman I’d never met but pictured clearly in my mind. Based on what I’d heard about her, how she had been born on a farm in the late 1800s and taught in a one-room schoolhouse, I imagined Grandma Neva looking like a cross between Whistler’s Mother and Auntie Em from The Wizard of Oz—with a little Annie Oakley thrown in.

Such a person was nowhere to be found amidst the adults who had crowded into the parlor of my aunt Opal’s house to welcome travelers from a distant coast. My disappointment at not seeing the mythical grandmother was quickly overcome by the sheer excitement of being their center of attention. Aren’t you a pretty little thing? my aunt Opal said as she smothered me with a hug.

To a ten-year-old girl from the suburbs of Los Angeles, this strange new land called Iowa was filled with curious and magical sights.

What were those giant stalks I saw through Aunt Opal’s window, shooting skyward in the distance? Corn, really? Like the stuff in the Green Giant can? Why were the men wearing overalls? And how did they get so tan with no beaches around?

There were warm and delicious smells, as well; chickens roasting, kernels frying, apple pies—made especially by my aunt Opal for our arrival—baking hot and crisp and sweet.

The arrival of my mom, her husband, and three children was big news in Keokuk County. This was where my mom, Suzanne, had spent part of her childhood. Still, amidst the parade of relatives I was meeting for the first time—uncles, aunts, second and third cousins I never knew existed—what was puzzling was the absence of the family matriarch, the saintly old woman whose face I searched for in vain: Neva Williams Finch, my great-grandmother.

Pronounced Nee-va, the name alone sounded exotic and alluring. Popular for girls in the late nineteenth century—she was born in 1883—Neva is supposedly Latin for snow, of which I was told they got plenty of in Keokuk County. But not now. It was the summer of 1971, and we had driven there from far-off LA. And it was during that trip that I learned the story of Grandma Neva.

My memories of her were really my mother’s: Neva was her grandmother, and they had spent considerable time together when, sometimes for months, she had been conveniently deposited in the Midwest by her mother, Ethel—an Iowa native who had moved to California as a young woman. While Ethel and her first husband worked things out (presumably a 1940s way of saying that they were getting a divorce), my mom was inaugurated into the traditional, uncluttered rhythms of agrarian life with Grandma Neva.

Now Suzanne was returning for the first time in years. My dad, a professional truck driver, sat behind the wheel of the family station wagon during the three-day trip, the muted sounds of American Top 40 radio—Carole King’s It’s Too Late, the pre-disco Bee Gees’ How Can You Mend a Broken Heart? and James Taylor’s You’ve Got a Friend—droning in and out through a hiss of static and a series of changing stations as we plunged into the heartland. We clocked 1,763 miles from California through Utah, Colorado, Nebraska, and to the southeast corner of Iowa, where rural Keokuk County is located.

In the back seat, my eight-year-old brother, Don, and thirteen-year-old sister, Lisa, and I fought and bickered. Partly to quiet us down, but mostly I think because she wanted to relive and share her precious memories, my mom told us stories of her time with Grandma Neva, unrolling her recollections as the miles clicked off on the Ford’s odometer.

Grandma Neva was a teacher, she told us.

Where?

In a one-room schoolhouse.

What? No way!

It’s true. And she was also a farmer’s wife.

Did he have a scarecrow?

Probably. They grew corn and beans, and that’s what they ate for dinner.

Yuck. No hamburgers?

Oh, the food on the farm was delicious. You’ll see.

What did you do with Grandma

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