Alan Maxwell writes of his wife, Jane, and the legacy she has left behind.

My darling wife, Jane Maxwell, suffered for most of her life from Friedreich’s ataxia. She was diagnosed in 1969 at the age of 13, confined permanently to a wheelchair by 16 and lived to reach the age of 60. Jane was, near the end, unable to speak or hear. Life was hard. She passed away calmly and serenely in hospital in May 2016 with her family by her side. We will always love her. 

Before she died, Jane wrote (with remarkable patience and courage) her own memoir/journal, Forever Yours, and this book has now been published by Westbow Press and is available (in ebook, paperback and hardback format) from Amazon UK

Jane's later years

Jane wrote Forever Yours with her chin during the final five years of her life, following a worrying spell in home-based palliative care. She had become increasingly ‘locked-in’ towards the end of her life, yet she wrote the entire book in this condition, enabled by assistive technology and a chin switch, much like Stephen Hawking - but thankfully nothing to do with astrophysics!

I will always be grateful to Ataxia UK, the charity that helps those suffering, like Jane, with ataxia, and their families. They provide welfare and advice, as well as support research for a cure. Ataxia UK set up the Specialist Ataxia Centre at the National Hospital for Neurological Diseases in London (Queen Square). Professor Giunti and her team at the Centre never gave up on Jane. There was always something else they could do. They showed real love and care, far beyond the call of duty, for many long years, and encouraged us to cope when we might otherwise have given up. 

Forever Yours

Jane and I met, fell in love and married at Stirling University in Scotland in the 1970's. Jane writes beautifully about our 'Stirling Years' in Forever Yours.

Forever Yours includes a touching childhood memoir in Part One, and goes on to deal with a number of serious issues in Part Two as her health deteriorates, including pain, suffering and loss, enduring love, faith, hope and joy. Through it all, Jane's incredible sense of humour and her positive outlook serve as a welcome, but disarming, motif. In such a negative world full of nothing but hopelessness, cynicism and bad news, Jane's voice - the ‘voice of the voiceless’ - is worth listening to.

The book launch

Here is a short talk I gave recently at one of the local book launches for Forever Yours. I speak of Jane’s incredible fortitude and independence of spirit, which saw her through hard times for many decades. Jane did not sit idly by in her wheelchair and wait for life to happen. She wrote lists for carers and myself on a daily basis (when she could no longer speak) and planned each detail of her life with clarity and grit. I am so proud of Jane and of her book. Assistive technology changed her life for the better and made this book possible.

Jane was always famous above all for her beautiful smile. I do hope this book inspires many with ataxia and that my brief talk might raise a smile for some and give you all an idea of how blessed I was to be her husband for almost forty years.

You can find out more about our ongoing book-related fundraising/events and raising awareness of ataxia at our Facebook page'Forever Yours' by Jane Maxwell on Facebook