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Over the course of a year , Neil Platt locomote from being a healthy 33 - year - old hubby and sire , to a humankind paralyzed by a rarefied , disastrous disease . In a cinema about the last months of his life , Platt provides a heartbreaking , at times amusing , and startlingly reliable sentiment of what it imply to be active .
In February 2008 , Platt , an architect in England , was diagnose withamyotrophic lateral sclerosis(ALS ) – also call motor neuron disease ( MND ) , and Lou Gehrig ’s disease . He and his wife , Louise , started ablogto keep family and friends informed of the disease ’s progression .
The film “I AM BREATHING” Neil Platt’s year-long battle with Lou Gehrig’s disease (ALS).
The documentary " I AM BREATHING , " which makes its United States premiere this weekend , secern Platt ’s story through his blog posts . The photographic film will be show Sept. 6 to 12 at the IFC Center in New York , and Sept. 13 to 19 at Laemmle Music Hall in Los Angeles .
Living and fail with ALS
ALS is a progressive neurodegenerative disease in which motor neurons , the cadre that deport signaling from the mind to the muscle , devolve and break down . Patients lose voluntary muscle control , leave in paralysis , loss of speech , and in the end death . [ The Top 10 Worst Hereditary Conditions ]
Platt ’s blog entries , save with the aid ofvoice recognition software package , do as the motion picture ’s narration and give watcher a glimpse of his experience .
" It ’s amazing how adaptable we are when we have to be , " Platt say in the picture . " It ’s what separates us , and delineate us as human beings . "
As the disease get along , Platt misplace the power to take the air , control of his body from the neck opening down , and finally the ability to swallow . His relentless decline is painfully paralleled by the burgeoning of his 1 - year - old son , Oscar .
Louise Platt cared for her husband , a physically exhausting endeavour . But the most difficult part for them both was the emotional view , Louise order . " We interchange very rapidly from being husband and wife , to patient and carer , " she told LiveScience . " It was groovy Oscar was around , because it kept us together as a family , " she said .
In the blog , Neil Platt ’s comment stray from profound musings on life and death , to amusing wisecrack about his routine experiences . His first symptom of the disease was find his right invertebrate foot slapping on the ground . Six month after his diagnosis , his hands stopped working ; nine months later , he lostcontrol of his legs .
Even as Platt lose ascendence of his body campaign , he continued to have sensation . Having small itches and not being able to expunge them was one of the worst component part of his gradual palsy , but facing the loss of talking to was the most hard , he says .
At one point , he writes a alphabetic character to his son , describe his university sidereal day , study architecture , getting into trouble with friends , and falling in love with Louise .
Platt also makes a " memory box " for Oscar with significant objects from his life , such as his favourite leather jacket , which he wore while bait a bike .
nominate the film
Platt used his web log not only to communicate with family and friends , but also to prove awareness and funding for ALS . He did interview with newspaper , TV and radio stations to inform people about the disease , in the hope that it might one day lead to a cure . [ The 9 Most Bizarre Medical Conditions ]
The idea for the documentary came from Platt , pronounce Morag McKinnon , a friend of the Platts ' who directed the film along with Emma Davie . " There are a lot of ethical dilemmas in terms of take someone who ’s suffer and dying , " McKinnon say LiveScience . But after considerable thought , she resolve to do it .
Davie described the horror she felt the first meter she see Platt paralyzed from the neck down , and the line between his impuissance and his baby son ’s vigor . But Platt was determined to do it .
" I cerebrate [ Platt ’s ] ambition was to raise consciousness about ALS , " Davie said , " but as clip snuff it on , he was face death , and could pass something about being live . "
Platt trust on a ventilator to help him breathe for his last few months , but he specified in hisadvance directivethat the ventilator be move out when he became ineffective to mouth . He writes in his web log that " The ability to communicate has to be the potent , most powerful exemption . "
Platt died on Feb. 25 , 2009 .
More than 5,600 people in the U.S. are diagnose with ALS annually , harmonize to the ALS Association . As many as 30,000 Americans may currently have ALS .
Platt was one of 5 to 10 percentage of patient with a heritable chassis of the disease ; his Fatherhood died of the disease in his 50 . This form is cause by genetic erroneous belief passed from generation to generation .
Doctors do n’t know what stimulate the remain 90 to 95 pct of ALS cases . No remedy or discussion exists that can block or override the disease .
