Filming my father in life and death.

Fraser Isaac documents the progression of his father’s Motor Neurone Disease since diagnosis in 2010. His aim is to provide an insight into how MND affects the lives of its sufferers and those of surrounding family and friends. Fraser’s father, Steve Isaac, explains the physical sensations experienced due to MND, and the philosophy he has adopted since being diagnosed. Fraser discusses how his father’s disease has affected his own thoughts on death and dying. Steve engages with voice recording software in preparation for him losing his voice. Fraser’s mother, Debbie Isaac, recounts her relationship with her husband prior to his diagnosis. Steve and Debbie discuss losing his ability to speak and the feeling of isolation he suffers. The family visit Steve’s consultant Professor Kevin Talbot, who talks through some of Steve’s most recent medical concerns. Steve trials a new piece of machinery, which artificially stimulates the diaphragm using electric sensors. Fraser explains how Steve is emotionally preparing his family for his death. Fraser’s sister Carly Isaac explains Steve’s desire for his wife to meet a new partner after his death. The family plans for Steve’s funeral with Vicar Reverend Will Hughes. Hughes discusses society’s lack of an emotional acceptance of death. Fraser explains a moment when his communication device was accidentally broken. The family discuss the emotional and practical pressures Steve’s MND has put on them. Steve develops a chest infection, and is placed on 24-hour breathing apparatus. Talbot discusses giving Steve a tracheostomy. Respiratory Consultant Dr Kayode Adeniji explains the quality of life for an MND patient post-tracheostomy, and the family talk about the emotional and practical burden this procedure might place on them. Talbot conducts an eye exam and explains the importance of Steve being able to continue using eye-tracking technology to communicate. The family discuss the complex web of emotions associated with Steve exceeding the average MND patient’s life expectancy.