Navigating Life with Amyotrophic Lateral Sclerosis


Book Description

Navigating Life with Amyotrophic Lateral Sclerosis provides accessible, comprehensive, and up-to-date information about the challenges patients, family members, and caregivers face when confronted by ALS. This guide covers all aspects of managing ALS, from the onset of symptoms, diagnosis, treatments, and coping strategies, to the use of home health care or hospice, and new research in the field. The book also sheds lights on difficult topics, such as end-of-life care and managing legal affairs. Formatted in a question-and-answer style, peppered throughout with patient stories, and with sections devoted to family members and caregivers, this compassionate resource provides guidance to those seeking to understand how to live with this disease.




Someone I Love Has ALS


Book Description

Kevin and Jodi O'Donnell, were a young New Jersey couple busy raising a toddler and making plans for their future when they received life-altering news in 1995 that changed everything as they knew it. Kevin was only 30 years old when he was told that his health problems were the result of a rare, terminal disease called ALS (Amyotrophic Lateral Sclerosis), or Lou Gehrig's disease. Kevin and Jodi had not heard of ALS until then and had no idea how those three letters would challenge everything they thought to be certain. After more than 20 years of working with ALS families, Jodi realized that more information and better resources could be available to help families who are coming to grips with the challenges of the disease and the caregiving responsibilities that are involved. In the Introduction to "Someone I Love Has ALS: A Family Caregiver's Guide," Jodi recounts the journey she took as a caregiver, advocate and writer and embraces and shares the lessons learned throughout the pages of this wonderful guide, "This guide was created by a variety of caregivers and professionals who have years of experience with various aspects of ALS. It was written by volunteers and experts who care about ALS and your journey. It is the resource that I wish we had received along with the shocking diagnosis." Although Kevin died of ALS in 2001 at the age 35, the disease never won the battle. ALS only strengthened Kevin and Jodi's love for God and each other and it created an even bigger purpose and plan: the creation of Hope Loves Company(r), the only non-profit whose mission is to support the children and grandchildren caregivers of PALS (people with ALS).




Until I Say Good-Bye


Book Description

THE NEW YORK TIMES BESTSELLER What would you do with one last year? Susan Spencer-Wendel was determined to laugh instead of cry. In June 2011, Susan Spencer-Wendel learned she had amyotrophic lateral sclerosis (ALS) - Lou Gehrig's disease - an irreversible condition that systematically destroys the nerves that power the muscles. She was 44-years-old, with three young children, and she had only one year of health remaining. She decided to live that year with joy. She left her job as a journalist and spent time with her family. She built a meeting place for friends in her backyard. And she took seven trips with the seven most important people in her life. As her health declined, Susan journeyed to the Yukon, Hungary, the Bahamas, and Cyprus. She went to the beach with her sons and to Kleinfeld's bridal shop in New York City with her teenage daughter, Marina, for a glimpse of the wedding she would never attend. She also wrote this book. No longer able to walk or even lift her arms, she tapped it out letter by letter on her iPhone using only her right thumb, the last finger still working. And yet Until I Say Good-Bye is not angry or bitter. It is sad in parts - how could it not be? - but it is filled with Susan's optimism, joie de vivre and sens of humour. It is a book that, like Susan, will make everyone smile. From a hilarious family Christmas disaster to the decrepit monastery in eastern Cyprus where she rediscovered her heritage, Until I Say Good-Bye is Susan Spencer-Wendel's unforgettable gift to her loved ones and to us: a record of their final experiences together and a reminder that every day is better when it is lived with joy.




But She Still Can Love: A Child's Understanding of ALS


Book Description

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that currently has no cure. ALS is a disease that typically involves a gradual onset, with initial symptoms that can be quite varied in different people. One person may struggle with lifting a coffee cup or grasping a pen, while others may begin slurring or losing their speech - ALS affects everyone differently. Regardless, ALS is a disease that always takes - takes someone's ability to help themselves, takes someone's ability to express themselves, and ultimately takes someone from the ones who love them most.Mom was taken from us by this disease too soon. She was a nurse of over 30 years, always taking care of others, to end up being taken care of herself. Though we ultimately lost Mom to ALS, we gained a purpose to bring awareness and support to others who may have or had the same experience with their loved one. Whether it's Mom, Dad, Grandma, Grandpa, or another loved one affected by this disease that always takes, always remember - but they still can love.For more ALS information and resources, visit als.org. A large portion of the proceeds from this book will benefit the ALS Association of Georgia Chapter's 'Walk to Defeat ALS' in honor of Mom, Marina Pascarelli.




More Love, Less Fear


Book Description

The despair that befalls a family when one of its own is forever changed by illness or tragedy is an experience we can only hope to escape. A serious accident, stroke, terminal illness, or more can cause stress and sorrow that are often unbearable. But we dont get to choose from a menu of life lessons. We simply wake up one day to them sitting on our plate. The question then becomes: What do you do? Daybreak jogs, PTA meetings, church choir rehearsals, laughter, and family timethese were the basic ingredients of Robert and Theresa Lees life together. Then, at age forty-three, Theresa was diagnosed with ALS. With raw honesty and grace, Robert chronicles the inspiring story of his late wifes twelve-year dance with the disease, his role as her caregiver, and the highs and lows ALS took their marriage through. A touching memoir filled with moments of lightheartedness, wisdom and simple humanity, readers will be uplifted by this brave couples tale of unconditional love and their ultimate message: You are not alone. Life is a never-ending teacher of lessons. The question is, Are we paying attention? In 2002, my life, which all along had been filled with many of these blessings-lessonsor blessons as I called thempresented the greatest challenge my family and I would have to face yet. Robert Lee, author




Surrounded by Love


Book Description

A touching account of how a family rallied around their father for the last year of his life as he battled ALS.




Lou Gehrig Disease, Als Or Amyotrophic Lateral Sclerosis Explained. Als Symptoms, Signs, Stages, Types, Diagnosis, Treatment, Caregiver Tips, Aids And


Book Description

The author, Robert Rymore, had a good friend who was diagnosed with Lou Gehrig Disease. He wanted to be able to help her and decided to buy some books about the disease. To his disappointment there was a lack of good informative books available on the subject. He decided to investigate the subject thoroughly and write a book about it to be able to help others. He decided he would start talking to professionals - doctors, physical therapists, speech therapists and occupational therapists - to learn more. He quickly realized the information he was getting would be extremely valuable for other people with ALS and their loved ones. This book has been a labor of love, one born of necessity and certainly one that aims to help those with ALS, their families, and their friends. ALS symptoms, signs, stages, types, diagnosis, treatment, caregiver tips, aids and what to expect is all covered. Including chapters about financial considerations, famous people with Lou Gehrig Disease and resources. The book is written in an easy to read and understandable style and contains tips for caregivers.




ALS


Book Description

Eliot H. Dunsky, MD, is a retired physician who since his diagnosis in 2009 has been living with ALS, the complex, progressively debilitating disorder commonly known as Lou Gehrig's disease. Determined to maintain the best quality of life possible-for as long as possible-he extensively researched the condition and its management. As he immersed himself, talking to ALS patients and exploring emerging assistive technologies and aids, he realized that misunderstanding of this complicated disease was rife, preventing many from making the most of the precious years left. The result is this compilation of not only his personal experiences as his own condition advanced but also current research and links to additional specialized resources. Its aim is to help other patients learn to live with their diagnosis and navigate the day-to-day struggles associated with it. Appropriate symptom management can help fend off the devastating effects of the disease for a longer period of time. ALS: An Orientation offers a practical guide for patients and their families on maximizing quality of life through strategic care and, importantly, coping with the emotional toll the disease can take. A terminal diagnosis simply means savoring to the fullest the life that is still possible.




Amyotrophic Lateral Sclerosis


Book Description

This volume provides comprehensive background for understanding amyotrophic lateral sclerosis (ALS) and a critical review of research. It points out the distinguishing characteristics of the disease and testing procedures for reliable diagnosis.




The Last Leaves Falling


Book Description

In Japan, teenaged Abe Sora, who is afflicted with "Lou Gehrig's Disease," finds friends online and elicits their help to end his suffering.