We’ve come across stories of Ataxia. We’ve read some of them.
Some of these titles deal with the Ataxian experience while others detail the thoughts and struggles of caregivers, friends and/or relatives.
Whichever you decide to read, note that the links below may take you to Amazon. If you purchase a book within 24 hours of clicking the link, HFA will get a small commission.
“Vernon was twenty-one, handsome, kind, fun-loving and Christian, and he was stealing my heart.” Thus began a love story that would evolve over the next twenty-three years through the blessing of five children and the sadness of living with a tragic, hereditary disease. That disease would continue to impact our family for more than fifty years. This story is a personal one. It is a story of deep sorrow mingled with the joy that comes from family, love, commitment, and faith.
Dana Creighton and her mother both were affected by the same inherited cerebellar degeneration, known as ataxia–a loss of control over body movements. Both were treated by a healthcare system that failed them in different ways. Yet their experiences were disparate. Creighton eventually found the right tools to piece together meaning in her life; her mother resisted accepting her condition, in part because doctors repeatedly said nothing was wrong with her. Twenty-five years after her mother’s suicide, Creighton’s memoir finds striking similarities and differences in their lives and traces a lineage of family trauma. Drawing on research in neuroplasticity, medical records, personal correspondence and genealogy, the author highlights the gap between the lived experience of a debilitating ailment and the impersonal aims of clinicians. She shows how the stories parents tell themselves about living with a genetic disorder influence how they communicate it to their children.
This book is about ataxia and multiple system atrophy, two rare conditions., that I have to live with. It was originally written for my adult kids, to begin with, explaining it to them so they hopefully would understand what ataxia and MSA is and can do to someone. Then to help spread ataxia awareness, so many people have never even heard of these conditions, let alone know anything about them.
This is the true story of one family’s struggle with Ataxia – a hereditary disease that claimed 1/2 of its number for five generations. It tells how men and women faced years of inevitable helplessness and death. It tells of the feelings of young people who watched and prayed as they waited apprehensively for the early symptoms of the disease.
Author Tammy Schuman led an active, charmed life. She was healthy and worked as a registered nurse in a good career; she was able to run and travel, and she had a great family and friends. Her entire life changed, however, in 1996 when she was diagnosed with spinocerebellar ataxia, a progressive neurological movement disorder. Everything she had built her life on shifted. She still had great family and friends, but the rest was slipping away. In 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 her life. She also relays her motorized scooting experiences with Skeeter, the inanimate best friend who gives her the freedom to get outside and be more mobile. With humour, the Scooter Sagas: Coping with Ataxia provides firsthand insight into one woman’s battles with a movement disorder and her fight to maintain her independence and dignity.
My name is Patricia Birdsong Hamilton. I was born and grew up in Atlanta, Georgia, graduated from Spelman College in Atlanta in 1974 and received my MBA from Atlanta University (now Clark ¿ Atlanta University) in 1975. I am one of seven children born to Annie and R.C. Birdsong, am married and am the proud mother of one son and one daughter. I was diagnosed with Spinocerebellar Ataxia at the age of thirty-four. Because I was unable to find a book that could provide me with some insight into the way the disease may affect me, I decided to write my own. My objective was to learn how to live with my medical condition. The books I wrote are about my personal experiences before and after my diagnosis. I discovered ways to cope with the disease, the way I came to grips with my situation and how I developed an attitude that enabled me to move on with my life. “My Thirty-Five Years with Ataxia” is a book that chronologically describes the challenges I have experienced over the years. I define ataxia and reveal some family history concerning ataxia. Through out the book one has to keep in mind that we are chemically and biologically different and we react differently to medication. With A positive attitude, the support of God¿s blessings, family and friends. I meet each hardship head-on. Other books published by the author are: A Balancing Act: Living with Spinal Cerebellar Ataxia Coping Skills for the Ataxia Individual Broken Shell Not, a Broken Spirit Stretching Toward a Healthier You! A Balancing Act: Walking What¿s UP? Why do You Walk Funny?
Shifting Into High Gear charts the course of Kyle Bryant’s transformation as he journeys on a recumbent tricycle across the United States in the throes of Friedreich’s ataxia, a life-shortening and disabling disease. Full of humour and reflection, it’s a heroic journey of a man driven to reframe the language of disease through action and service.
As you travel with Kyle during two cross-country bike rides through the American West, Texas, the Southern States, and finally to the shores of the Atlantic Ocean, the grueling rides become a compelling backdrop for a series of lessons and ruminations which embrace an alternative worldview and provide practical solutions to everyday problems. A thrilling adventure story, yes, Shifting Into High Gear is also ultimately about helping readers reinterpret the conditions of their lives and learning how positive thinking, purposeful connection, and deliberate actions can help anyone reach beyond their limits and live a bolder and bigger life no matter what the circumstance.
Deeply passionate and compassionate, Kyle uses his amazing story to teach readers how to replace the handicapping language of “disability” with the agency to build a thriving and hopeful life. He bravely exposes the shadow-side of using disabling language and asks us to commit to a collective goal of understanding disease and its emotional impact and embrace the disabled population as equal individuals. In telling his story, Kyle’s desire is that instead of viewing disease as a deficit, we would see it as another state of being—simply as a life that strikes out on a different path.
**** All proceeds from each book goes directly to research to cure Friedreich’s Ataxia ****
When the spirit of Marie Schlau, a German Jewish girl born in Frankfurt in 1830, awakens in her grave in the cemetery of Wurzburg, she is determined to unravel the unanswered questions which have branded her existence, casting an ominous shadow upon her descendants.
An enigmatic illness marks her life and those of her bloodline, their personal destinies dogged by mysterious diagnoses, accidents, disappearances, murder, love, tenderness, greed, lies and death .
Marie relives those confusing years of her life while watching over her great-great grandson Ron Mc Klyn, as he discovers secrets that have remained hidden for more than a century.
Submerge yourself into this passionate and emotional story that will not leave you wanting. Innovative, original, creative and united …
– Navarra rare diseases group GERNA
– FEDER Foundation for the Research of Rare Diseases
The pseudonym A.F. BABEL represents the 17 authors of this collective novel: María Blasco (Spain), Jamie Leigh Hansen (USA), Diego Plaza (Spain), Eva Plaza (Spain), Rebecca Stant (Australia), Pilar A. Tolosana (Spain), Marguerite Black (South Africa), M. Luz G. Casas (Spain), María Pino Brumberg (Spain), Ramón Roldán (Spain), Nicola Batty (UK), Susan A. Carter (USA), Fátima D´Oliveira (Portugal), Kristina Zarrantz (Spain), Inma Priego (Spain), Sarah Allen (UK), Claudia Parada (Mexico).
13 of the 17 authors of this collective novel suffer from Friedreich’s ataxia, a neurodegenerative illness that currently has no cure. This illness attacks children and young adults, crippling them and shortening their lives. This degeneration causes uncoordinated movements, scoliosis, dysphagia, dysarthria, and in many cases diabetes and serious heart problems. in a fairly short time,they are forced to use a wheelchair and to become dependent on the care of their families or third parties. Only their intellect and creative talents are left unaffected.
BabelFAmily is a non-profit association that takes a pro-active stance in the fight against Friedreich’s ataxia. Their ongoing, invaluable support brought this project light.
The Legacy of Marie Schlau currently exists in Spanish and is being translated into other languages by a volunteer team of professional translators.
All proceeds from the sale of this novel, in any language and any format, will be devoted to curing Friedreich’s ataxia.