These books were written by authors who are affected by ataxia or other chronic or rare diseases and can be purchased through the website addresses provided after the description of each book. This list is provided for informational purposes and does not indicate an endorsement by the National Ataxia Foundation (NAF) nor does the content of the books necessarily reflect the views of NAF.
A Sharp Turn: A Step-by-Step Guide to Negotiating the First Year of a Serious Medical Condition
by Julia Soriano
The advice and systems in this book have been designed to give you as wide a berth as possible to travel along the sharp turn you have just made. Drawing on her gift of organizing and her business experience author Julia Soriano developed systems for completing the myriad of tasks that suddenly became urgent, while remaining in control of her life. In this combination instruction/memoir book she shares both her systems and her stories with anyone affected by a serious medical condition.
Finding Meaning with Charles: Caregiving with Love Through a Degenerative Disease
by Janet Edmunson
Drawn from experiences over the five years she spent caring for and learning from her husband’s degenerative disease. The book is positive, uplifting and includes affirmations for caregivers, designed to support and strengthen all those who are caring for those touched by health issues. email@example.com (508) 308-4195
Gabe & Izzy - Standing up for America’s Bullied
by Gabrielle Ford with Sarah Thomson
The moving, true story of the young woman dubbed “The Voice of America’s Bullied”; how her bond with her dog, Izzy, changed her life; and their mission to help break the cycle of bullying. In middle school, Gabrielle “Gabe” Ford developed a degenerative muscle disease, and was harassed by bullies as a result. Then Gabe got a dog, Izzy, who developed an uncannily similar disorder. This is her amazing story—from her lowest days dealing with various challenges, to the unbelievable and immediate bond with Izzy, to her ongoing mission to put an end to bullying, one school at a time.
Healing Wounded Doctor-Patient Relationships by Linda Hanner with contributions
by John J. Witek, M.D.
This book is packed with information that anyone who ever goes to a doctor for any reason deserves to know and that every professional who wants to maximize his or her healing power must understand. The authors reveal surprising facts about what’s behind doctor-patient mistrust and offer ample demonstration of how something as simple as effective dialog helps doctors and patients move toward productive relationships. Available through the National Ataxia Foundation (Here)
I’m Fine, but Thanks for Asking
by Jude Lally
An enlightening new full-length collection of poems about the challenges of living with Friedreich's Ataxia. From the difficulties of coping with isolation to the joys of spending time with family and friends, Jude Lally has captured a wide spectrum of emotion in these brilliant poems. Available on Amazon
by Kendra Gottsleben
See how Kendra discovers that her positive attitude helps her make the best of life’s challenges as a child with a rare health condition called MPS. She describes those challenges as lemons and explains that life’s “Lemons” will happen, but that doesn’t mean that those lemons can’t be made into “…the best lemonade possible.” Available on Amazon
Life with Ataxia: A Different Perspective
by Jonas Cepkauskas
This book is not only helpful for those affected with ataxia, but any life-changing event or situation. Jonas Cepkauskas provides strategies and ideas on living with ataxia or any difficult situation using common sense and encouragement. This book does not give direct answers, but encourages readers to find ways of adapting to the condition. Practical advice on mobility devices and diet, exercise and attitude are discussed in this book.
Necklace of Stones: A Memoir of Poetry and Place
by Alice Lee
Artist and poet Alice Lee retraces her life in Alaska, China, Italy and elsewhere, exploring in this memoir how she reinvents herself, refusing to be defined by her genetic inheritance. While the family illness of ataxia are the stones that weight her shoulders, Lee wears the necklace with grace. Hers is a vision of the whole woman with a past, a voice, responsibilities and an open heart.
One Step at a Time: Living with Ataxia and Multiple System Atrophy
by Angela MacLauchlan
Angela MacLauchlan’s book details the path which led to the discovery of an obscure brain disorder that would change her life. This thoughtful and optimistic book describes her coping strategies and shows her continuing love of life despite having a rare and debilitating illness. Sprinkled with humor and sensible suggestions, this book would be beneficial for anyone needing strength to overcome struggles of any kind.
Scooter Sagas: Coping with Ataxia
by Tammy Lanning Schuman
In the Scooter Sagas: Coping with Ataxia, Schuman narrates her experiences by sharing her snarky emails, private journaling, website chatting, and public blogging. In this memoir, she describes the reality of living with ataxia and the ways in which it affects every aspect of life. Available on Amazon
Splash into Calm
by Ellen Sichel
Ellen Sichel knows that chronic illness, stress and pain wreak havoc in every area of life. She shows us how to transform reaction and frustration into focused, energized, calm living. Splash Into Calm is much more than another “how to” book. Her warmth, humor and positive approach is refreshing and engaging, right down to the easy to read monthly format.
by Gabrielle Ford
Still Dancing is a rallying cry for recognizing bullying’s lifelong impact. Gabrielle Ford suffered bullies’ torments for years while facing a devastating illness. One special love pulled her out of her depression and isolation. Through strength and determination, she became a nationally-known motivational speaker featured on the Today Show and Animal Planet.
Strong Medicine: A Roadmap for Creating or Improving Your Independent Living Program
by Bob Michaels
In Strong Medicine Bob Michaels shares ideas and lessons that he has learned in his years of working in the field of independent living, in both government services and the non-profit sector. The reflections and strategies in his book are based on ideas and tools that he developed. In his own words: “I will share experiences that made me laugh and one that made me cry. I will tell you stories that will fill you with pride and anger at the same time.” Available on Amazon
Summer Born: A Life with Cerebellar Ataxia
by Cheryl Wedesweiler
Mandy Wheeler is just 17 when she learns that she has Ataxia due to cerebellar degeneration. The book begins shortly before she is diagnosed, then it describes the events of her diagnosis, her reaction to the diagnosis, and how she struggles to accept her disability.
Ten Years to Live
by Henry J. Schut
The story of the Schut's family struggle with hereditary ataxia and the impact it had on this extended family. It is dedicated to the author's brother, Dr. John W. Schut, who was committed to the cause of finding a cure for ataxia, which claimed his life. Available through the National Ataxia Foundation (Here)
The View from Down Here
by Jude Lally
This is Jude Lally's first poetry collection. The author speaks from his unique perspective as a writer who uses a wheelchair and describes the everyday frustration of an intelligent and creative human being dealing with the physical challenges of Friedrich's ataxia. Available on Amazon
There’s Nothing Wrong with Asking for a Little Help: and other myths
by Dave Lewis
This is the memoir of Dave Lewis who was diagnosed at age 14 with Friedreich's Ataxia, a fatal progressive neuromuscular disease. For the next 25 years he challenged himself to live life to the fullest. In the memoir he reminisces about his seemingly normal early years, the origin of his condition ("It seems that in the genetic crap-shoot of life, I rolled snake eyes.") and his years of steady physical decline. Throughout the story he shares his emotional highs and lows, the challenges and the losses sprinkled liberally with his unique sense of humor. Sometimes accused of being stubborn, he said he was simply doing what was needed to "make a life in the middle of a nightmare." Available on Amazon