{"id":32975,"date":"2014-12-15T15:56:15","date_gmt":"2014-12-15T14:56:15","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=32975"},"modified":"2017-01-31T09:36:52","modified_gmt":"2017-01-31T08:36:52","slug":"global-health-film-initiative-i-am-breathing","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2014\/12\/15\/global-health-film-initiative-i-am-breathing\/","title":{"rendered":"Global Health Film initiative: I Am Breathing"},"content":{"rendered":"

\"global_health_film\"<\/a>Mobile phone company: \u201cHello sir, I hear you are wanting to disconnect. Can we ask why sir?\u201d<\/p>\n

Neil: \u201cBecause I\u2019m dying.\u201d<\/p>\n

Phone company: \u201cWould it make a difference if we threw in an extra three months for free?\u201d<\/p>\n

Neil: \u201cIf you can do that sunshine, then you are a better bloke than all of my doctors put together.\u201d<\/p>\n

Neil has motor neurone disease (MND). Within a year Neil, who is 33 years old, is diagnosed and dies of\u00a0this rare but devastating disease. He fearlessly lets us into the intimate, last days of his life with\u00a0his beloved wife and young son Oscar in the film I Am Breathing<\/a>\u2014<\/em>screened by the Global Health Film initiative <\/a>at the Royal Society of Medicine last month.<\/p>\n

The film\u2019s difficult topic is made light of by Neil\u00a0himself at times\u2014something he also did in his blog<\/a>, and which he desperately kept up until the day\u00a0before he died. But it\u2019s this brutal honesty and openness that makes his story so gruelling on the\u00a0heart. It makes you want to scream out to the world about what this incurable ravaging disease is\u00a0really about, which is exactly what Neil wanted.<\/p>\n

MND, also known as ALS (amytrophic lateral sclerosis), is what all of those ice bucket challenges\u00a0were about. The disorder, while more common in men, is very rare and only affects about two in every\u00a0100 000 people in the UK each year. But as Neil\u2019s story shows, this unforgiving disease works by\u00a0eventually destroying all of the muscles in the body, leading to complete disability and death.<\/p>\n

\u201cThere is nothing harder in the whole of medicine than MND,\u201d said Dr Martin Turner, neurologist at\u00a0the Oxford MND Centre, at the event last month. \u201cIt is an extraordinary condition. It takes fit people\u00a0and catastrophically pulls apart their motor system [in a way] they never saw coming.\u201d<\/p>\n

Neil\u2019s dad died of MND 10 years previously at the age of 51, and it looks like Neil had a rare familial\u00a0strain of the disease. It is something that clearly haunts Neil as he watches his 1 year old son do\u00a0the simplest of things, such as eat lunch or play in the garden\u2014both things that Neil couldn’t do for\u00a0himself.<\/p>\n

In the film we hear about how a carefree, recently married architect goes from a walking stick to a wheelchair and complete paralysis, from the neck down, within months. Viewers look on as Neil\u2019s\u00a0body ruthlessly fails him, and the disease progresses\u00a0at a speed that surprises all around him, including\u00a0healthcare professionals.<\/p>\n

\u201cWe almost felt like we were educating them [healthcare professionals] as we went along,\u201d said\u00a0Louise Oswald, the widow of Neil, at the event, as she explained the importance of carers pushing for\u00a0assistance and for always being one step ahead. \u201cPart of the reason we were able to do this was\u00a0that we knew what was coming because of Neil\u2019s dad.\u201d<\/p>\n

Louise is hoping that this film will not only\u00a0raise awareness among the general public about the devastating effects and unbelievable speed of this disease, but also increase awareness among healthcare professionals.<\/p>\n

The soft, rasping, ever present wheeze of Neil\u2019s breath through his ventilator is at times deafening\u00a0and panic inducing\u2014<\/em>a constant reminder of the effort each breath takes and what is to come. From his\u00a0diagnosis to his death, every last second of Neil\u2019s life is spent writing his blog or being filmed for this\u00a0documentary.<\/p>\n

\u201cThe freedom to communicate is the most important thing for human beings,\u201d says\u00a0Neil, as he explains his decision to remove his ventilator as soon as he loses his voice or ability to\u00a0swallow. We watch on as we see a man in constant fear of losing his voice, while he desperately uses every last breath to fight for awareness.<\/p>\n