Website and Blog for the Sam McMahon Trust

There are numerous parenting books available for parents offering advice on how to best care for their children. However parenting a child with a chronic illness poses additional challenges and the need for greater support. The demands of everyday day life are complicated and pushed to the extreme with the added pressure of medical appointments, treatments and procedures.

In Extreme Parenting, author Sharon Dempsey, writing from her own experience with her son Owen who was ill for several years and eventually died at home, gives an insight into the world of chronic illness and the effect on parents, siblings and extended family members. She defines chronic illness as treateable or manageable but not curable.  She acknowledges the importance of the parents ability to cope and the impact of their care giving on the wellbeing of the child.

Extreme Parenting does not represent the experience of parents who have children with Friedreich’s Ataxia but offers advice and reassurance. Dempsey emphasises the need for good and effective channels of communication.  She provides practical advice on issues such as coping with hospitals and treatments, advocacy, communicating with health care professionals and tips for family life.

A difficult but rewarding and inspiring read.

Strong at the Broken Places by Richard M. Cohen is the remarkable story of five ordinary people trapped in the difficult and challenging world of serious chronic illness. Cohen spent three years chronicling the lives of five diverse ‘citizens of sickness’: Denise, who suffers from ALS; Buzz, whose Christian faith helps him deal with his non-Hodgkin’s lymphoma; Sarah, a determined young woman with Crohn’s disease; Ben, a college student with muscular dystrophy; and Larry, whose bipolar disorder is hidden within. The five are different in age and gender, race and economic status, but they are determined to live life on their own terms. Cohen formed intense relationships with each; he talked to their families and friends, and shared joy, even in heart-breaking setbacks. Though each individual’s illness wreaks havoc in a different way, Cohen shows how their experiences are strikingly similar and offer us lessons on self-determination, on courage in the face of adversity and public ignorance, on keeping hope alive, and on finding strength and peace under the most difficult of circumstances. We are strong at the broken places, stronger than we think. In sharing these inspirational and revealing stories, Cohen and his fellow warriors against illness offer a chorus of hope.

Richard M. Cohen was due to address the Friedreich’s Ataxia Symposium in Philadelphia last November but was unable to do so as he was unwell. Having read this book in preparation for the symposium it’s worth noting that although this is a challenging and tough book to read, it offers an insight into the world of chronic illness and the determination of those who carry on despite everything.

Louise Marley’s novel The Glass Harmonica tells two parallel stories. The first begins in 1761 and concerns a young orphan named Eilish Eam, who earns her keep by playing music on water-filled glasses on the streets of one of London’s poorer districts, until she is discovered by Dr. Benjamin Franklin. Impressed with her talent, he offers her a proper place to stay in exchange for her services in developing and playing his own similar invention, which he calls his glass armonica.

The other, which occurs in 2018, follows Erin Rushton, a professional musician whose specialty is an instrument that evolved from Franklin’s original device. Erin’s brother, the composer of much of her repertoire, is undergoing experimental sound therapy so that he can recover some of the mobility that he has lost through the degenerative condition called Friedreich’s Ataxia (FA). As the novel progresses Erin realises that her glass harmonica may provide the key.

The two tales run concurrently in roughly alternating chapters, converging when each character glimpses or feels the ghostly presence of the other.

Although the reader learns very little about Erin’s twin brother Charlie, his frustration with his disability is palpable. It is also somewhat disheartening that in the world of the novel (2018) a cure for FA is still eluding the medical profession. That said the great strides being made in scientific research around the world give us great hope for the future, and anything that raises awareness about the condition is good for the world of FA.

In 1990 Dr Susan Perlman, a clinical Professor of Neurology at UCLA and Director of the Genetic Neurologic Diseases Clinical Programme, the Ataxia Centre and the Post-Polio Clinic and Nadia Hamed, Nutritionist created ‘Nutrition and the Patient with Progressive Cental Nervous System Disease‘. Revised this year, the manual is an essential guide to good nutrition, with particular focus on patients with neurological disorders of movements and related diseases.