Huntington’s Disease is a degenerative hereditary disease which causes mental decline and physical symptoms such as jerkiness and uncoordinated movement. There is currently no cure for the disease and children of those who are affected have a 50% chance of inheriting it. 11-17 May is Huntington’s Disease Awareness week and the Huntington’s Disease Association are fundraising and raising awareness for the disease. Author John Symons has lived with this disease all his life as his Father suffered from it for 25 years. Below are video extracts in which he explains how this has affected his family. This influenced him to write two biographies and a novel about which the details are below.
“I have been working with the distinguished author and documentary film director Jonathan Stedall on a video in which I describe how the bleak moments caused by the disease were faced with love and hope by my parents. Mr Stedall worked with John Betjeman and Malcolm Muggeridge, so it was a fantastic privilege for me that he made this video as a gift for the Huntington’s Disease Association.
“As there is a 50:50 chance of inheriting the disease, children of the affected had to live with uncertainty about whether or not they would develop symptoms until a test was developed. In this clip I explain why my wife and I chose not to have children and why we chose that I should not have the test when it did become available later in my adult life.”
“Palliative care is so important. The atmosphere of care and love which surrounded my Father in his old fashioned mental institute was so strong. This love is what allowed my parents to survive those years. It teaches sufferers how to live with this condition and prepare for the end. There is no current cure and there is an inevitability in the decline of the mental and physical capacities so naturally depression and also suicide are higher among sufferers than the population as a whole.”
“Stranger on the Shore and This Life of Grace both take the story of my family and how this disease affected their whole lives. My Father’s death was the natural conclusion of Stranger on the Shore but it leaves the reader ‘as though they had fallen off a cliff’. This Life of Grace tells how my Mother was enabled by character and outlook to live a full life for 25 years afterwards with faith, purpose and grace.”
John has published the following books which touch on the subject matter of Huntington’s Disease and are mentioned within his video interview. All are available from Shepheard-Walwyn at the links below.
“This highly unusual book tells the story of an ordinary Cornish family affected over generations by an appalling genetic disease, and by the nightmare of not knowing who it will strike next. Yet there is a kind of triumph amid the suffering. The sensitive writing on a subject that could hardly be more serious makes for an unforgettable read.” The People’s Book Prize website.
“Throughout, there is an uneasy feel of sinister undercurrents which increasingly intrigue and lead the reader ever onwards. Cleverly put together; dream sequences develop together with scenes of nervous exploratory action amidst the suspicion of dark deeds to come. A very original book whose story sticks in the memory.” 5* review on Amazon
“This Life of Grace is written with such warmth and deep affection and understanding, bringing the characters vividly to life. Grace was a person of dignity and humility, an unusual combination, to which I felt a sense of eloquence, wit and humour should be added. She was very much a Grace.” Peter Smith of Crane Books
For more information about Huntington’s Disease or to donate visit the HDA website.