Sister Demelza Scott, who lives in Australia, says her family told her her brother was braindead, and she should rush to Whang\u0101rei before they turned off his life support.<\/p>\n
But Demelza was surprised to arrive at Whang\u0101rei Hospital to see her older brother staring back at her, seemingly able to understand what was happening<\/a>.<\/p>\n \u201cHe was right there \u2013 we could tell he was trying to say \u2018don\u2019t you dare give up on me\u2019.\u201d<\/p>\n At this stage, Scott could only move his eyes up and down or blink<\/a>, so they worked out a system: looking up to mean \u201cyes\u201d and closing his eyes to mean \u201cno\u201d.<\/p>\n He was asked, three days in a row, if he wanted to survive and he communicated \u201cyes\u201d each time.<\/p>\n When asked what motivates him, Scott reflects on his Catholic faith and points upwards.<\/p>\n He admits at one point, he thought he would be called to heaven by his maker: \u201cIf that was His will then I would be happy with that, but it wasn\u2019t, so here I am.\u201d<\/p>\n Scott says he is lucky to have the support of friends, who he met through St Francis Xavier Church, Calvary Chapel and Christian fitness and MMA classes, Lions Den Ministries.<\/p>\n Battle over ongoing rehabilitation continues<\/p>\n Scott has since made impressive progress, defying his diagnosis<\/a>.<\/p>\n His intubation was removed and he began breathing on his own, then started moving his head. He now has full movement of his head, can move one hand and is able to say a few words.<\/p>\n But his future beyond the walls of Whang\u0101rei Hospital is uncertain because there is no specialist stroke rehabilitation centre in New Zealand offering the one-on-one care he needs.<\/p>\n This would have been different if he was a spinal or brain injury patient.<\/p>\n \u201cThere should be support for people like me and there\u2019s not,\u201d Scott says. \u201cThe system would be happier if I chose death instead of life, no matter how it looks.\u201d<\/p>\n Scott says his condition is rare.<\/p>\n \u201cI\u2019m the only one that has what I\u2019m facing, so nobody\u2019s got experience with it, not even the hospital, which makes it fun.\u201d<\/p>\n The team at Whang\u0101rei Hospital is committed to supporting Scott with his ongoing care, rehabilitation and recovery journey, Pimm says.<\/p>\n \u201cWe\u2019re really pleased that Ryan has made steady progress. With a stroke like Ryan has experienced, it is unlikely he will recover full movement. However, recovery can continue for some time after the stroke and it is very difficult to say what function will be regained.\u201d<\/p>\n Given the nature of Scott\u2019s condition, Pimm says it is likely he will need ongoing care and rehabilitation, which is a challenge in Northland.<\/p>\n \u201cWe will work with Ryan and his wh\u0101nau to identify the right long-term care, wraparound support and rehabilitation programme for him.\u201d<\/p>\n Funding another challenge for Ryan and wh\u0101nau<\/p>\n While Scott is battling to recover, funding for his care is another battle, Demelza says.<\/p>\n Scott is eligible for support through the Ministry of Social Development\u2019s Disability Support Services (DSS)<\/a>, deputy chief executive Anne Shaw says.<\/p>\n Northland Needs Assessment and Service Co-ordination provider NorthAble has assessed his situation and is working to confirm a place where he can rehabilitate safely, she says.<\/p>\n But Demelza is concerned Scott won\u2019t have enough funding to cover both his day-to-day care and his ongoing therapy. <\/p>\nRyan Scott, 41, is now able to move one hand and use a computer to talk with the control of his eyes, but his recovery from locked-in syndrome still has a long way to go. Photo \/ Denise Piper<\/p>\n
Ryan Scott says no one used to second-guess him because he was a big, muscly guy who knew what he wanted. The stubbornness has remained.<\/p>\n
Ryan Scott, 41, used to regularly go to the gym and work as a building contractor but all that was taken away in an instant when he had a stroke.<\/p>\n