The screenings, taking place in more than 20 countries, from the UK to Australia, are part of a Global Awareness Day for MND – also known as ALS or Lou Gehrig’s disease.
Neil was diagnosed with Motor Neurone Disease in February of 2008. Neil and his wife Louise started writing a blog, Plattitude, in July 2008 to keep their friends and family informed about how they were getting on and also to promote awareness of MND and help other people living with the disease.
‘I am breathing’ is a documentary of the last few months of Neil’s life. Within a year, he goes from being a healthy young father to becoming completely paralysed from the neck down. As his body gets weaker, his perspective on life changes.
Neil faces MND with incredible humour and honesty, determined to share this last stage of his life through his blog, which touched many people. With his blog posts forming the film’s narration, ‘I am breathing’ listens to Neil as he asks “what makes us human” in the last months of his life.
MND is a rapidly progressive and fatal disease. It can affect any adult at any time and attacks the motor neurones that send messages from the brain to the muscles, leaving people unable to walk, talk or feed themselves.
The cause of the disease is unknown, and there is no known cure. Around 5,000 people in the United Kingdom have MND at any one time, with half of these people dying within 14 months of diagnosis.
The UK premiere of of the film took place yesterday, 20 June, at the Edinburgh International Film Festival.
The campaign is a collaboration between Scottish Documentary Institute and the Motor Neurone Disease Association, with screenings taking place around the world including in the USA, Iceland, Russia, Estonia, Poland, China, India, Kenya, and Mexico.
Further information about the film and details of local screening are available on the I am breathing website.
MND and palliative care
In 2011, the All-Party Parliamentary Group on Motor Neurone Disease, a cross party group of MPs and Peers with an interest in MND, published a report of their inquiry into access to specialist palliative care for people with MND.
Recognising the role of hospices, the report considered how to increase the availability and quality of specialist palliative care for people with MND.
More recently, the MND Charter, called for early access to specialist palliative care for people with MND, in a setting of their choice, including equitable access to hospices.
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