Life and love with MND: Lisa Genova's Every Note Played with Prof Dominic Rowe

Published in 2018, Lisa Genova’s Every Note Played follows the experiences of renowned concert pianist Richard Evans from the moment he is diagnosed with a form of Motor Neurone Disease, or MND, to his death less than two years later. It is a confronting, blow-by-blow account of the physical deterioration caused by MND, but also a testament to humanity’s capacity for empathy, love and redemption. 

In this special episode, recorded in support of MotorOn (which raises funding for MND research), Jonty talks to Professor Dominic Rowe - director of the Macquarie University Centre for MND and one of the world’s leading experts in MND. 

When Every Note Played begins, Richard is recently divorced from his wife Karina, but neither have been able to move on from their anger and endless emotional ruminating. But when Richard is diagnosed, Karina becomes his primary carer. Over the last months of his life, they learn to forgive one another and move on - one towards death, the other towards creative rebirth. 

Every Note Played is the fifth novel by Lisa Genova, who made her debut with the bestselling Still Alice in 2007. Still Alice was adapted into a film, with Julianne Moore giving an Oscar winning performance in the title role as the 50 year old Alice who develops onset dementia. Richard Glatzer directed the film while suffering from advanced MND - and he died a few months after release. Inspired by Glatzer, and their friendship, Genova wrote Every Note Played.

Content warning: this episode is a frank conversation about a subject some may find disturbing.

For more information about MND, please go to: 

Macquarie Centre for MND Research - www.mndnsw.org.au - the site has links to info lines and information packs 

If you are interested in donating to MotorOn and supporting the work of the Macqueries Centre for MND Research, please go to www.motoron.org

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