Millikenweb for Myotonic Dystrophy Information and Support

September 2010

The Book
Disabled & Challenged: Reach For Your Dreams!

As a Husband and Father of recently diagnosed Family members with Myotonic Dystrophy, you can imagine I read every thing I come across regarding the disease. Most articles, reference materials and books are exhausting and long-winded. I was intrigued when I heard of a new book out by a young man with Myotonic Dystrophy named Terry Scott Cohen and his psychologist dad Barry M. Cohen called Disabled & Challenged: Reach For Your Dreams!

The book is all about Terry’s life experiences before and after the Myotonic Dystrophy diagnoses. Not unlike many of you that will read this review, you probably have or know a close family member with this disease, and if the person you know has had a disability from a young age you know that growing up with a disability is challenging to say the least every step of the way. If you the reader was fortunate enough not to have a disability, think back to your childhood, adolescent and teen-age years and remember the confusing times trying to make friends, sleepovers, school, dating and your first job. Adolescent and teen-age years are a confusing and trying time at best but with a disability, I could only imagine the stress. If you thought getting acne was a problem, what do you think life would have been like in a wheel chair?

Thanks to Terry with his insightful illuminating true-life stories covered from the prospective of a person that realized “My disability isn’t in charge of my life. I am.” We can all see what life would be like with out the simplest things we all take for granted. However, would we be able to look at life with the same zest Terry now does?

I would like to take this opportunity to personally thank Terry for his book; I for one will take away from reading the book a better understanding of those with disabilities and a more compassionate outlook on life.

Kudos Terry.

Other comments and excerpts from the book.

Terry has myotonic muscular dystrophy. He has written a book for teens and young adults who face a lifelong disability or disease. As a teen, he struggled the most, fell into despair, and even had thoughts of suicide. Then it hit him – he realized “My disability isn’t in charge of my life. I am.”

Terry and his psychologist dad spent a year writing his book. Terry said that doctors and teachers can tell young people all about their disease, but they cannot tell them how to go through life with it or how to stay the course and reach for their dreams.

Just a few of the skills young readers will find in the book:

Ø    Getting your doctors to stop talking over the head and scaring you
Ø    Finding healthcare buddies who really care about you, not just your disability
Ø    Making good friends
Ø    Interviewing and landing a job
Ø    What to do with people who don’t give you a chance or expect next to nothing of you
Ø    Having fun- enjoying your life despite your limitations
Ø    Planning for the future- living the life you want
Ø    Teens and young adults have found the book inspirational. Caregivers and parents are reading the book to their kids.