Motor neurone patient: ‘My life has hope, joy and meaning’

A man with motor neurone disease (MND) has described a life of ‘hope, joy and meaning’ despite the difficulties of living with the condition.

John Hughes, a former psychotherapist for suicidal patients, believes that the current law helps protect vulnerable people.

He says that since his diagnosis four years ago, he has “lived a joyful life”.


MND is a rapidly-progressing disease that affects the brain and spinal cord. MND attacks the nerves that control movement so muscles no longer work. There is currently no cure for the disease.

German research into depression among patients with forms of ‘locked-in’ syndrome, including MND, found no evidence of greater depression than the control sample.

I’m happy the opportunity to end my life didn’t exist

John Hughes

Hughes noted that healthcare professionals involved in the study “couldn’t believe the patients were happy” and “were stubbornly convinced that the patients were unhappy”.

He said: “In my own case I suffered years ago from terrible depression. I’m happy the opportunity to end my life didn’t exist”.


Despite doctors’ advice that he would suffer ‘an unbearable life trapped conscious in a useless body with no hope of joy or escape’, Hughes opted to insert a feeding tube into his stomach and a ventilator to assist with his breathing.

I don’t have any pain, just inconvenience

John Hughes

Hughes said: “I’m almost paralysed from toe to Adam’s apple now, so I’m permanently at home in a hospital bed.”

But he added: “I don’t have any pain, just inconveniences.”

“From my description I expect you think happiness is inconceivable in such a condition, but I have never really regretted my decision to opt for life. It’s wonderful!”

‘Hope, joy and meaning’

Hughes said: “I am living, not dying; loss of independence brings unexpected love, there’s hope, joy and meaning in my life, perhaps more than ever”.

I am deeply grateful for this illness, I wouldn’t want it any other way

John Hughes

“I am deeply grateful for this illness, I wouldn’t want it any other way. I have come to see it as a gift from God, an expression of His desire to draw me close to Him.”

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