Amyotrophic-Lateral-Sclerosis Books

T. R. Pearson is probably my favorite author -- I look forward to reading his books and stop by amazon on a regular basis to check for his new works. Augie's Quest was a most interesting read for me for two reasons -- Pearson was the author, and I have been personally touched by ALS (my father and one of my brothers died from the disease). The story of Augie, his journey with ALS, his drive and determination to work towards a cure, to pursue new paths in search of a cure -- is most captivating -- and knowing T. R. put the words to paper assured me that many people would find this book and come away being touched by Augie's story -- for the story itself and for the superb writing. When you finish this book, think about a donation to Augie's foundation, and then come back to amazon and search out Mr. Pearson's other writings -- mostly fiction -- you will be glad you did.

Augie: Thanks for sharing your world past and present! Your book gave me a terrific insight into ALS and your fight for life and significance. You are an inspiration to us all and I came away with a better appreciation for my own life and what is important!

Thanks

Kim Megonigal

I was a little disappointed in Augie's Quest. I saw Shirley McClaine on a talk show and she was so hyped up about the book and about how Augie was so instrumental and amazing in his quest. True, Lou Gehrig's disease (ALS) is a horrible and quickly invasive disease, but I was more interested in how Augie dealt with his disease than with the tremendous amount of research and technical aspects of ALS that are given in the book. I was looking for a more personal insight into Augie and his wife, Lynne, in their daily dealings with this disease. However,if you know someone with ALS, you will find this book very informative.

"Perhaps no other disease takes the physical and emotional toll quite like ALS, and I can think of no one who understands this more fully than fitness pioneer Augie Neito. Augie's Quest speaks to us all about life, how we choose to live it, and what can happen -- physically and emotionally -- when the unexpected hits us in the face. But Augie's story is about more than how one man chooses to face adversity, it's a playbook for how to live life on your own terms. Anyone who reads Augie's Quest comes away enriched by the experience."

Dr. Jeffrey Trent
President and Scientific Director, TGen

This is a different read compared with Tuesdays with Morrie. It contains a wonderful mix of narrative and personal testimony. While it tells the story of Augie's life, it is much more focused on what Augie has chosen to do with his life: find a treatment for ALS, and, cut through some of the academic/scientific red-tape that slows the process. As I was reading I kept thinking of a friend in Idaho who said, "I would never trade what I have learned from this disease for anything in the world!" I was especially struck by the quote: "Life is not measured by how many breaths we take, but by how many moments take our breath away." Thanks, Augie! Well done!
John Free, Ph.D. (Psychologist)

I HAVE NOTICED THAT SOME OF THESE REVIEWS ARE FROM PEOPLE WHO KNEW DARCY. FROM THIS, I AM SURE THAT HER FAMILY AND FRIENDS WILL CHECK UP ON THE REVIEWS ON AMAZON FROM TIME TO TIME. TEN YEARS FROM NOW, WHEN SAMUEL READS THIS HE CAN FEEL PROUD OF HIS MOTHER AND THE LIFE SHE GAVE HIM. THIS BOOK BY DARCY IS IMPOSSIBLE TO PUT DOWN. I HAVE A 1 YEAR OLD AND I AM ALONE THIS WEEKEND TAKING CARE OF HIM AND I MADE TIME TO READ THIS BOOK WHILE HE NAPPED A COUPLE TIMES AND FINISHED THIS BOOK AFTER HIS BEDTIME. AFTER READING THIS BOOK, I WILL ALWAYS REALIZE HOW LUCKY I AM, EVEN THOUGH I HAVE SUFFERED FROM MANY PHYSICAL PROBLEMS THROUGH MY LIFE, NOTHING COMPARES TO WHAT DARCY WENT THROUGH AND IT MAKES ME HAPPY THAT SHE GOT TO MEET HER SON BEFORE SHE WENT ON TO THE NEXT WORLD. ONLY A PARENT COULD UNDERSTAND THAT FEELING.

ALSO, I AM SURE YOU WILL AT TIMES FEEL AN EMPTINESS IN YOUR HEART, SAMUEL, BUT I HAVE A GIFT TO HELP YOU THROUGH YOUR TOUGH TIMES. I'M NOT GOING TO TELL YOU WHY I RECOMMEND THESE GIFTS, BUT ORDER THEM OR CALL ME AND I'LL PURCHASE THEM FOR YOU! I MEAN IT.

ORDER THE BOOKS AND READ THEM IN THIS ORDER.
1.CLOSER TO THE LIGHT BY MELVIN MORSE
2.RETURN FROM TOMORROW BY GEORGE RITCHIE
3.AND IF YOU LIKE THOSE TWO FOR MORE,,,READ THE STARTER, LIFE AFTER LIFE BY MOODY.

I HAVE READ HUNDREDS UPON HUNDREDS OF BOOKS AND I RECOMMEND THESE TO ANYONE AND EVERYONE WHO'S EVER LIVED.



YOUR MOTHER IS AN INSPIRATION TO ANYONE WHO COMES ACROSS HER STORY. GOD BLESS HER.

I was hoping that this book would be an uplifting account of hope to encourage my husband who was recently diagnosed with Lou Gehrig's disease. It was NOT. Would not recommend it.

This is a book I find myselfing re-reading a couple times a year (and I don't tend to re-read books). Inspiring, truthful, I feel I could really relate and understand the author. Love this book! Truly beautiful. She left a precious gift to her readers. Highly recommend. Please read other reviews to learn about the content of this book.

This book is very easy & quick to read - good for those who don't like to spend a lot of time reading one book.

As I was reading this book, I could easily relate to Darcy's frustration. A few years ago, I had a neurological problem where my muscles were slowly becoming weak, and I could hardly walk or move. It was extremely exhausting just getting out of bed. Thankfully, my problem was resolved, but I remember at the time watching other people go about their normal business, like walking etc, and thinking "They are walking so easily, like they don't have to think about it", yet I had to think about everything I did, just like Darcy.

I felt genuine empathy for Darcy, and I am so happy that she lived her last year with so much happiness, despite her terminal illness.

This book reminds me of another I have read recently by Kim Dalton "The Real Fight". Recommended reading.

In the first half of 2003 Darcy Wakefield, age 33, began to seriously assess her life. A relationship had broken up and while she was happy with her roles as runner, swimmer, writer and college English professor, she longed for more. A child, she realized, was essential to her; a man, important but not essential. She took a bilateral approach to her goals, registering with dating services and investigating sperm banks. Darcy had the magnificent good fortune to meet her soulmate in a Denver doctor named Steve, nearly 2,100 miles from her home in southern Maine.

As her relationship with Steve grew in strength, Darcy's strong runner's legs began to weaken. In October of that year she was diagnosed with motor neuron syndrome -- ALS -- Lou Gehrig's disease. This fatal but unpredictable disease kicked Darcy's life into "fast-forward." Steve moved to Maine to be with her, they began house hunting, and early in 2004 Darcy was pregnant.

This journal-like little book is Darcy's exploration of her new world. The short essays are dated and each is named with a present participle that celebrates her new appreciation of life in the here-and-now -- "Committing;" "Expecting;" "Moving;" "Helping;" "Loving;" and the poignant final section, "Birthing," in which she describes the birth of their son Samuel.

While Darcy hopes for a remission of her disease, her thoughtful writing explores the twin realities of her blessings and her losses. Within a year she loses the ability not just to run, bike and swim, but eventually to walk, write and speak. Along the way are wonderful lessons about how to live life joyfully and understand the meaning of disability. "I hate asking for help," Darcy writes. "I am ... a Mainer by birth and disposition, which is to say that I am an independent, stubborn, do-it-my-way-and-by-myself kind of woman, the sort of person who hates being dependent on others."

When the simple things that Darcy took for granted are lost to her, she finds a way to accommodate the loss. In her former life as a busy athletic woman, for example, she rarely took time for manicures. Now unable to do her own nails, she begins to have them done regularly. She writes, "The real truth of my ALS is that it takes daily acts of courage to get up, live the day fully, be grateful for what I have, and to find the humor and grace and the pleasure, yes, pleasure, in not being able to clip my own nails." And as cooking and even eating become difficult for her, she describes her new way of eating: "Slowly. Mindfully. Thankfully."

There is nothing self-pitying about I Remember Running: The Year I Got Everything I Ever Wanted - and ALS; nor is there a false gaiety or denial about her life with ALS. Darcy Wakefield writes intelligently and with the utmost courage about her daily accommodations to weakness and to getting everything she ever wanted, all in the space of little more than a year. Far from being a sorrowful read, this little book may be the most heart-warming and thought-provoking thing you will read this year. Some of Darcy's essays were produced for Maine Public Radio and she made fund-raising public appearances. When she could no longer read her work, her sister Betsy read to the audience. In her last appearance Darcy sat in her wheelchair while Betsy spoke her words: ''You may very well be one of those people who's sitting on a great story, waiting for the right time to write it. Here's my challenge to you. Write now. Write here. Write your first sentence."

Although it's outside the time scale of this brave little book, readers should know that Darcy Wakefield died in December 2005, three months after this book was released. Her partner, Dr. Steve Stout, lives in Maine with their young son Sam.

If you've ever lost or loved -- and who hasn't? -- Darcy Wakefield's intensely personal story will touch your soul.

Linda Bulger, 2008

I bought and read the book when it first came out, and I bought a second so I can loan it to others to read and not worry about my first book getting lost. Besides the Donnellys, some of the people and events in the book were apart of our life as well. Very well written!

I just found out about Michael's death through the Gulflink website. My sympathy goes out to his family. His story, with the help of his sister Denise, will be with us all always. He could have chose to sit back and just kept his disease and facts to himself, but he chose to share it with all in the hopes it might make a difference to someone. What a legacy to leave. And thanks Michael, for helping my family live through our anger we had at my brother's death, and dealing with Gulf War illness. My prayers are with your family....
Kelly Seibert
Hillsborough, NC

In this story there is a message for millions of Americans. In this story the reader will learn about the "wheels of justice."

I obtained a tape of this book from the library of the blind , on tape.
I was fascinated with the whole process of his student days as well as the way they worked in the present time illness.
My heart goes out to him and his family and ALL other Soldiers who became ill with no apparent cause after the war.
I would like to know what his present status is, and would like to help in any way that is possible.
In thinking that our present war situation probably is as tentative, to hold this VITAL information back from those who serve makes a mockery of the Ideals our Country was founded on.
I used to participate in Living History, and the good thing about that is that we seem to LEARN from the past.
War does NOT change minds or hearts.
I would hope and pray that this present generation does not have to pay the price of this brave Soldier, Officer, and Gentleman.

I first came across the book in the fall of '99. It was at a critical time in my air force career. Soon, the mandate to submit to the anthrax vaccine would require a decision that would obviously affect the rest of my life. Take a vaccine that has been proven to cause terrible reactions and has been whispered to be a root cause of Gulf War Illness or refuse and be subject to military justice and the end of my career.

In my squadron, the most asked question to management was "If we become ill following the vaccine, will the Air Force take care of us?" As I saw in this book, the answer to the question is NO.

As pilots, our most treasured asset is our health. Without it, we can no longer perform the mission that we love. The manner in which Michael and Denise describe the physical and mental anguish he endured was truly overwhelming. I could imagine myself in his position and the way I would react; how I would feel.

In my months of research, this book proved to be one of the many determining factors in my decsion. When I talked to former commanders who reminded me of their experiences with Agent Orange or when I spoke with members at my own base that had testified to Congress about their illnesses following the anthrax vaccine, in the back of my mind was Michael Donnelly.

I ultimately made my decision to resign in lieu of taking the vaccine which has led to the end of my aviation career. The only salvation I have is the knowledge that I will never need to worry about unexplained illness in the future.

My most heartfelt sympathy and gratitude go out to Michael and Denise's families. Michael's story is one that I will never forget. Thank you for helping me make my decision.

Like another reviewer, I also have the pleasure of knowing Joe Martin. And while I knew of some of his remarkable achievements, I was astounded to read of many more. Like Joe, I have ALS, Lou Gehrig's disease. He, and his book, have inspired me to live life with joy, love, purpose, hope and faith notwithstanding the ravages of this disease. His book, like Tuesdays With Morrie, should inspire anyone and everyone. But while Morrie spoke as a dying man, Joe, with the same terminal illness, speaks with the vitality of a man truly living life to the fullest.

Laura Murphy Atlanta, Ga.

Mr. Martin's book is an inspirational and moving work for anyone to read, regardless of your position in life. If you've ever faced adversity, there is something to be learned about courage and optimism from this book. His candor, humor, and vision will inspire you and give you a sense of appreciation for this life we have. My mother is suffering from a degenerative disease, and this book gave me a new sense of perpective on what she and many others face as they battle each step of their disease. As a North Carolinian, I am proud that this brilliant writer and powerful soul is a leader for our community, and has been able to reach out and touch so many other lives. This book will make you cry, make you laugh, and most importantly, give you inspiration and appreciation for what you have.

I found this first person account co-authored by Joe Martin, who has ALS, very inspirational. Joe allows the reader to share his feelings of frustration as well as to grasp the depth of his convictions that life should be celebrated and cherished. Ross Yocke's commentary throughout the book provides an additional source of information which is helpful for the reader to gain perspective about Joe Martin's life with ALS. This short 178 page book pulls the reader into Joe Martin's reality, and allows the reader to share his religious and moral convictions, as well as to revel in his wonderful anecdots. This book reminds me of Tuesdays with Morrie. I hope others will enjoy reading On Any Given Day as much as I have.

Joe Martin and his family (family, friends and bank colleagues) are the greatest support system. Joe's life inspires, challenges and motivates all to do more. His will to live is refreshing, unbelievable given the impact of ALS on his body but not on his mind or spirit. For anyone facing disease, stress or looking for meaning, this is a must read.

It's a quick read and doesn't leave you down -- but instead deals with a tough subject -- living with a terminal disease -- with reality and purpose. You will learn how "you can live like this"

I cannot add much to the previous reviews-- all of with which I agree-- except this: Mr. Martin is, first and foremost, a writer. Indeed, he has ALS, and that is much of what he writes about here. But his lean, athletic style, keen observation and outstanding sense of humor would entice me to read router bit catalog copy, if Mr. Martin wrote it. I'm in search of his short story published in the Crescent Review (malcolm@walkaboutpress.org-- if anyone finds it first) and am hopeful he is at work on something else for us to enjoy and think about.

I read this book about 1976. It has always stayed with me. I even wanted to do my 9th grade science report on ALS because of this book. I never forgot the dogs name, Cicero. It was such a visually imaginable book. I think I sub-conciously named my first, Jordan because this book never left me. It will make you cry and bring you to a place that no one goes to.
I HIGHLY recommend this book to all. It is a wonderful book. I hope they put it back in print so my daughter can also fall in love with it. Gosh, I think I read it 10 times.

Jordan is eighteen years old.He has three brothers and one sister.There's this girl that Jordan really likes her name is Susan.When it was his birthday they made him a party.When they were at the party Jordan's left knee bucked and he feeled forwared.When they went to the hospital the doctors didn't knew what it was. So they has to go to the Mayo Clinic.They told him he had a disease and might die.Em gave him a puppy.Later they meet the Mr.and Mrs.Ricket.At the end he got curred. I really enjoyed the book it was a great book. My favorite part was when he got the doggie.My favorite character was Jordan because he was fighting for his life. A liked it alot and you should read it because it's a great book and you will enjoy it alot.

I read this book for the first time many years ago and still find myself returning to it time and time again. The strength of family that it portrays never fails to touch me.

I too read this book as a teenager and was forever touched by the candidacy and sensitivity of the author's narrative. I read it over and over, never failing to be effected by the sad decline of the central character. Unfortunately I leant the book to a friend who failed to return it to me. Whilst I have rumaged through many second-hand bookstores, it has failed to surface. It remains however, indelibly etched in my memories as a book of substance which always caused a 'lump in my throat'..

I read this book for the first time many years ago and still find myself returning to it time and time again. The strength of family that it portrays never fails to touch me.

My uncle sent this book to me and since my father died of ALS, I read it with great interest. I also found the book to be a starting point for me, a success story of sorts, as I battle with a recent diagnosis of another auto-immune disease without effective treatment. I'm the "monkey see, monkey do" sort, so I needed guidance from someone who's walked in very similar shoes and could offer perspectives and advice I'm not getting from the medical establishment. I am so grateful for this book, as it continues to help me persevere -- I recommend it highly to patients and caregivers alike.

David has an excellent way of telling his story and beeing able to beat his ALS. He has given me hope and a light at the end of the tunnel. It is a positive book that every PALS should read.

This is a great tribute to all ALS patients, family and friends. I thought the book was very unique with great stories and encouragement to find a cure.

I originally thought that I would be very depressed and feel awful for the people and families affected by ALS - but I was wrong! This book is filled with personal stories that show the resilience and spirit in everyone that "keeps the hope alive" there will someday be a cure.

This charming book helps parents and children open communication about a subject which is often more difficult for adults than children-illness. In this playful, colorful book the child can see that the adult they love may not be able to do today what they did yesterday- but in their 'dreams' they do. Imagination brings hope eternal in the minds of all children, no matter how old.

For the reader or the listener, this book is a true heartwarming experience.

This charming book helps parents and children open communication about a subject which is often more difficult for adults than children-illness. In this playful, colorful book the child can see that the adult they love may not be able to do today what they did yesterday- but in their 'dreams' they do. Imagination brings hope eternal in the minds of all children, no matter how old.

For the reader or the listener, this book is a true heartwarming experience.

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.

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.

Having grown up in the New York metropolitan area as a baseball fan, I was well acquainted with the story of Lou Gehrig. At least I thought I was until I listened to Carol Birch's spirited retelling of his life. I knew of his statistics and his tragic demise, but Carol brought this American hero to life. Too many baseball fans are unaware of those who so gracefully pioneered the game. However, Carol's story will be enjoyed not only by baseball aficionados but also by anyone who enjoys a good story - which covers everyone.

This is an excellent CD. It highlights the life of a man who started with humble beginnings and rose to true greatness. Carol Birch reveals not only the highlights that made Lou Gehrig a superb ball player, but she also paints a portrait of a man who understood humility and viewed his achievements as a gift he received.

It is a fascinating dialog that reminds us that a true hero is one who gives of himself asking nothing in return and faces difficulty with courage. Quite a contrast to the shooting stars of today that receive so much undeserving praise. This CD was enjoyed by everyone in my family.