Disabled & Challenged: Reach for your Dreams!

By Terry Scott Cohen and Barry M. Cohen

Terry Cohen, a young adult with Myotonic Dystrophy never wrote a book, and then after graduating from high school, he decided to write one dedicated to all young people with progressive disabilities and seeking a full life.

Terry writes— he has a disability and disease inherited from his mom, and must face it every day of his life. A

• Language: English
• Publisher: WishingUwellPublishing
• Release date: Apr 22, 2020
• ISBN: 9786058435674

Terry Scott Cohen

Terry has now written two books, and given invited speeches. His disease has now progressed. He has an electric scooter, and drives an accessible van. At one point, he had a special girlfriend who he wanted to marry, but she just could not break away from the family who loved her. Terry moved back home to Florida. He since has traveled extensively with his caregiver dad. He has traveled the world while he could. His second book, Travel Near & Travel Far: Step Out of Your Disabled World, has been featured on the New York Times Travel Section, and his books are both endorsed by many websites, including the Christopher Foundation and the Myotonic Foundation.

Book preview

Welcome...

Thank you for buying my eBook:

Disabled & Challenged

You will read about my journey growing up and facing the challenges I faced dealing with my life long disability. I hope reading my book will help you to begin your own journey to make the best of your life.

—Terry Scott Cohen

TitleHalfPage.tifTitlePage.tif

Copyright © 2005 Terry Scott Cohen and Barry M. Cohen

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 publisher.

Published by WishingUwell Publishing

1560 Gulf Blvd., Unit 1202

Clearwater, FL 33767

For direct sales of this book or if you would like to share your

own story with us, please send email to [e-mail]

To buy the book online, please visit www.amazon.com/

or www.barnesandnoble.com/

For inquiries from the special needs community, educators, and health care

professionals, please send email to [e-mail]

Publisher’s Cataloging-in-Publication Data

Cohen, Terry Scott.

Disabled and challenged: reach for your dreams!

Disabled & challenged: reach for your dreams!

— Clearwater, FL: WishingUwell Publ., 2005.

p. ; cm.

Print: ISBN-13: 978-0-9769524-0-4

Ebook: ISBN-13: 978-605843-56-7-4

1. Youth with disabilities—Psychology. 2. Quality of life. I. Title. II. Cohen, Barry M.

HV1569.3.Y68 C64 2005

362.4/0835—dc22 2005928899

2020 Reprint book production and coordination by

Janet Mortensen-Chown, Mortensen Design, Williamsburg, Michigan

2005 Book production and coordination by Jenkins Group, Inc.,

Interior production by Debbie Sidman

Cover design by Eric Tufford

Cover artwork by Jenniffer Julich

Printed in the United States of America

24 23 22 21 20 • 6 5 4 3 2

Dedication

This book is dedicated to my mom, Julie Cohen, who also has my disability, and with each passing day, goes on to do her very best.

—Terry Scott Cohen

Acknowledgments

I would like to express my appreciation first and foremost to my dad, Dr. Barry M. Cohen. He helped me through every step of organizing and writing my book. He made my dream come true.

My uncle, Ed Cohen, himself a dreamer of all sorts of architectural designs, read each and every chapter as I wrote them. His words of encouragement and support will always be remembered. My good friend in Thailand, Pongporn Sudbanthad, did all the illustrations in the book. I cannot thank him enough for his generosity and kindness.

Corey Glick did the digital photography special touches for the Zookeeper of the Day photo. He told me it was a labor of love for him. He is such a giving person.

Michael McGrath deserves my deepest gratitude for offering his photo On Top of the World for the end of my book. Michael lives in Great Britain, and I hope someday to meet him.

I am equally indebted to all my special buddies and doctors over the years: Dr. Jeff Sourbeer (general practitioner), Dr. Michael Franklin (neurologist), Dr. Jeff Jacobson (psychologist), Janica Van Brocklin (exercise therapist), Chris Bray (massage therapist), and Richard Estren (learning disabilities coach). They have kept me healthy and hopeful for a cure! I also owe a special note of gratitude to Dr. Ray Bowman (psychologist) who supported me through some of my darkest times.

Last, but certainly not least, I am forever thankful to all the counselors and friends at Vista Vocational & Life Skills Center, especially Sharon Dries, who got me started on my path toward independence, which I am following to this day.

Terry Scott Cohen

Contents

Welcome...

Disabled & Challenged

Copyright © 2005

Dedication

Acknowledgments

About the Authors: Terry Scott Cohen

About the Authors: Barry M. Cohen, Ph.D.

Preface

Chapter 1: The Luck of the Draw

Understanding Doctor Language

My Special Physical Therapy Buddies

Chapter 2: My Biggest Decision

My Problems and What I Am Doing

Chapter 3: My Abilities Help Me Be Happy

Chapter 4: The Brightest and Darkest Times of My Life

Multiply Your Brightest Memories

The Darkest Times in My Life

Life after High School: I Couldn’t Find a Job

Chapter 5: Learning How to Live Independently

Chapter 6: Finding and Keeping a Job

What Do You Say to an Employer about Your Disability?

How to Keep a Good Job

Here are some of my favorite photos about my life!

Chapter 7: Achievement

Chapter 8: Friends, Lovers, Relationships

Girlfriends and Boyfriends

Pets Are Special Friends

Chapter 9: Dear Terry

Chapter 10: Big Dreams

Dreams from Imagination

Chapter 11: The Future

My Near Future Dreams Are Happening Right Now

The Big Challenge: My Far Future

Chapter 12: Do Your Very Best

Christopher Reeve

Heather Whitestone

Patty Duke

Everyone with a Disability Has a Story to Tell

Dream what you want... —Michael McGrath

About the Authors

Terry Scott Cohen

Terry is both a very lucky and very unlucky guy. He has myotonic muscular dystrophy (MMD), which is the most common form of muscular dystrophy for adults. Terry was born with the MMD gene. Terry’s mom has the disease, but did not know she had it at the time Terry was born. The genetic cause of this disease has only been known for about ten years. There is no known cure or treatment, but scientists are working hard for breakthroughs now.

Terry’s disease causes muscle weakness throughout his body. It also has caused learning disabilities, stuttering, abdominal problems, swallowing difficulty, and the list goes on. Myotonic dystrophy does not kill you. Rather, people die from one of the many complications of the disease, generally at an earlier age than most adults.

Terry was thirty-one years of age at the time he wrote this book. His first medical problems occurred when he started school. He repeated kindergarten twice, and then attended special education schools throughout high school. Terry met many other children in school who also suffered from different kinds of disabilities. He saw firsthand how hard students with disabilities have to work to do the things most kids take for granted.

Terry also has been very fortunate because he has had the benefit of good doctors, caregivers, and a great team of other medical people who have helped keep him as strong as possible as he fights his disease. In addition, Terry has had the benefit of counselors and psychologists who have shown him the way past the depression and frustration which has caused him a lot of pain.

When Terry graduated from high school, he was all pumped up—scared, but excited to face the world. He wanted to get a job, have lots of new friends, and start to date and kick up his heels. Instead, he ran into a brick wall. He could not find a good job, bouncing around from one to another, and felt entirely lost and alone. It was only with the help of a great therapist that he got past thoughts of suicide during this time.

Terry learned the hard way that for a person with a disability, finding a job is very challenging. He tried some state programs, but ended up feeling even more meaningless, and the friends he made were more interested in using him than really being his friend. Most of his employers were no better, and he got little or no help from them, despite the medical limitations that were becoming more apparent.

Terry then decided to attend a special program for young adults who were facing the same problems he had after high school. The program was over fifteen hundred miles away from home, and that was a very big step for him. Terry met people there with all kinds of limitations, including brain damage, birth defects, crippling from accidents, and diseases like his own. He learned how to live as independently as he could, making the right friends, taking care of his medical problems himself, holding a good job, and helping his other friends with disabilities begin to start new lives for themselves.

After six years of living away and attending the program, Terry decided to return home. Leaving his new friends and counselors was a very hard decision. Terry now lives in his own apartment, works part-time, gets disability aid, and has made a new life for himself. His disease has progressed. Fortunately, he can still walk, but not well. He uses a scooter when he can. He actively does physical therapy. He has some new friends—mostly disabled people, but not all. He has a life, and he is happy. Terry knows that his future will hold more medical problems, and he is doing all he can to live his life to the fullest every day. He has said all along that he is a person with a disability, not a disabled person. He wants to see his dreams come true. Writing this book is one of his dreams come true.

About the Authors

Barry M. Cohen, Ph.D.

Barry is Terry’s dad, and they have always had a very close relationship. Today, Barry is a caregiver both to his wife, Julie, and to Terry. He has seen firsthand just how myotonic dystrophy gradually takes its toll. Julie can no longer walk by herself, falls easily, and has some of the same problems Terry already has at a younger age.

Unfortunately, when myotonic dystrophy is passed down from mother to son, the disease gets worse for the son. That is part of the genetic challenge of this disease. As a result, Barry has made a special effort to help Terry realize his dream of writing this book. All the ideas and subjects in the