FORMER RAF officer David Rhodes tells of the devastating impact of MND on his life - and his suspicions that it may be linked to his time in the armed forces.
MOTOR Neurone Disease (MND) is a progressive disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control, and David Rhodes says that when he was diagnosed as suffering from it in 2018, it was devastating news which he and his family initially took badly.
"It was fear of the unknown," he says. "How long did I have left and what would happen to me? The specialists couldn’t tell me that because the disease progresses at different rates. I could live another 20 years or 6 months. The average expectancy is 2 years after diagnosis.
"There is no treatment apart from a drug called riluzole which is claimed to slow down the rate of progression briefly. I tried riluzole but it did not agree with me.
"At present, I am only able to move my eyes. My sight and hearing are unaffected, but I am unable to speak or smell."
David, who has claimed that he has been failed by the RAF since he was medically discharged, said: "I am fed through a pipe in my stomach which is also used to administer my medicines. I’m fully dependent on a ventilator to help me breathe and need equipment to help me cough in order to remove secretions from my chest.
"I live in hope that a cure will be found before it is too late for me. It is reassuring that the government has recently announced increased funding for MND and that high profile sportsmen with the condition are raising funds and awareness."
He said the love, support and devotion of his wife Shelley and their children had kept him going, and home was where he needed to be, particularly after spending eight months in ICU at York Hospital following a tracheostomy in 2019.
He said there was evidence of a link between MND and serving in the armed forces, "For example, Glasgow University conducted a survey in 2015 and concluded that those serving or who had served were 50% more likely to contract MND than those that hadn’t," he said.
One of his consultants, Dame Professor Pam Shaw, one of the leading MND specialists in the UK, had also said that there was growing evidence of a link
However, the RAF did not accept that his MND condition was attributable to his service, and this meant he did not qualify for the special support and benefits given to Armed Forces personnel with complex and enduring physical, neurological and mental health conditions resulting from injury attributable to service, which would have been invaluable to him.
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