How the man in the iron lung lived life to the full

Paul Alexander was left quadriplegic after a serious bout of polio. He spent more than seven decades using his iron lung, longer than anyone else in history. But what was it that marked him out from so many of his peers, and kept him going? The iron lung uses a negative pressure system.

Powered by a motor, its bellows suck air out of the cylinder, creating a vacuum around the patient and forcing the lungs to expand. When the air is let back in, the same process in reverse makes the lungs deflate. The device needs a source of energy to function. Over time Paul learnt to consciously breathe by gulping down air, using his throat muscles to force air into his lungs.

He called it frog-breathing. As his confidence and strength grew, he was able to spend increasingly longer periods out of the iron lung. This allowed him to experience a bit more of life. Paul was allowed to venture into the neighbourhood in his wheelchair with childhood friends.

His parents helped Paul move in with his iron lung, and then he was on his own. He was in the dorm and different people just took care of him accidentally. He went on to practise law in Dallas. Philip says he became the master of his own domain, helping people to help him.

He had to deal with the surprise of clients on entering his office and seeing him in his iron lung. Not even professionals are trained to take care of a quadriplegic in an iron lung, he says. Paul Gaines had one carer who was in his life for decades. When Kathy Gaines died, her passing left Paul bereft.

In 2015, his iron lung began to leak. As the machines were by now extremely rare, it was a race against time to find someone able to carry out the vital repair job. Brady Richards had come into possession of two iron lung machines at a building clearance. Paramedic had been transporting Paul to and from hospital, as carers fought to keep him alive in the failing iron lung.

On learning about the emergency, he immediately set about rebuilding one of the broken machines he had in his warehouse. Mr Richards swapped the damaged machine for the new one at Paul’s apartment. But later that night Mr Richards received a call from Paul’s carer to say the machine wasn’t working. Mr Richards quickly realised the neck collar wasn’t on properly and had come loose.

He worked out how to fix the problem. Paul was initially placed in an iron lung. He recovered to a point where he could live his life without significant breathing support. But as he aged he began to need more help.

He had access to more portable breathing devices, which used a different sort of technology to the iron lung, to help him breathe. Paul never moved full-time to these mask-based devices. Paul Porteous is the regional president of the British Polio Fellowship. He now uses a respirator mask for about 17 hours a day.

Mr Porteous had a long career, first in stockbroking and then in various senior roles for Rowntree. He married and has four daughters. Dr Murphy is full of admiration for the people who cared for Paul. He wrote about it in his 2020 memoir, which he typed himself, using a pencil attached to a stick gripped in his mouth to reach the computer keyboard.

Philip says it was after the book was published that he fully realised what an inspiration his brother was. Last year Paul was recognised by Guinness World Records as the person who had lived the longest in an iron lung. Dr Murphy says patients like Paul and their families do it at home on their own. 34;If you speak to lots of trained doctors or nurses they won’t be confident in managing a patient.