book: Journeys With ALS
 
 


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Journeys With ALS

D L R C Pr, 1998 - 292 pages

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A unique perspective

How often do we see a book about ALS totally written and edited by persons with ALS (PALS )and their family members ? That is what makes "Journeys With ALS" both a unique and compelling book. Edited by David Feigenbaum, a PALS from Virginia, "Journeys" is a collection of over 30 firsthand accounts of people living with ALS.

Although none of the contributors to "Journeys "is a professional writer this is not an amateurish effort. The writing is straightforward and concise, and the simple power of each individual story is what grabs the reader. Many of the stories are inspirational, several are brutally blunt, but all speak from the heart. They all describe the necessary adjustment process every PALS goes through , both physically and emotionally. But the real beauty of the book lies in the differences of each of the stories. We are reminded again of the many varied progressions and symptoms inherent in ALS . Even more significantly, "Journeys" highlights the individual PALS, each of whom has a unique personality and existence beyond their illness , a fact often overlooked by many.

Successful coping with ALS involves a willingness to learn both new techniques for the body and new attitudes for the soul. "Journeys " is, at its finest, a learning experience . A "veteran "PALS or family member will find much in the book with which they can identify. But, even the most veteran of us also will surely find some new perspectives. For the newly diagnosed, the book offers some insights into what they may expect in the future. More importantly, however, "Journeys" proclaims loudly for all that there is indeed life, much life, after diagnosis.


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For Individuals Wanting to Know More about "Living" with ALS

This is a great book for those patients or families who will have to deal with ALS. Since a close member of my family was diagnosed, this book helped me to anticipate what the future might bring and decisions that may have to be made.

Also good emphasis was placed on keeping hope and life alive.


The deadly neuromuscular disease ALS strikes adults of all ages from all walks of life. Some are well known -- actor David Niven, soap star Michael Zaslow, Sen. Jacob Javits, physicist Stephen Hawking -- and their stories have been told and retold.

This book is about the rest of us. People like Marcie Gibson, diagnosed at age 23 while pursuing her dream to become a Dallas Cowboys cheerleader; Fred Kanzler, a retired engineer; Garland Neill, a long-haul truck driver; John Cahalan, a lawyer and a lover of the outdoors.

It's about housewives, small-business owners and professionals, government workers, educators, and even a young guitarist named Kyle Hahn who, with his girlfriend Terry Frank, has taken ALS activism to a new level with their Banner of Faces campaign.

All have one thing in common: diagnosis ALS.

When someone receives the terrible news, the first reaction is: What am I in for? How will I be able to cope? What are others doing? Often, addressing these concerns is not an area where doctors excel.

Living in the shadow of ALS (textbook prognosis: three to five years) is a harsh journey down a road they didn't expect to take. In this book you will find 33 of these first-person journeys. Some are hopeful, some sad. A few are angry. All are powerful, real-life examples of people doing their best to cope, often with humor and high spirits.


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