A Brentwood man has revealed how his life has been transformed after being diagnosed with a rare condition.

Graham Keith Robson, 67, lived an active life as a teacher until he was informed that he had motor neurone disease (MND) last October.

He started showing symptoms like losing his grip and having problems while walking since January 2022 and had to undergo several tests.

The news of the diagnosis, he said, “came as a hammer blow” to him and his wife, Mona, who also worked as a deputy head in a school.

Recalling their life before the diagnosis, Mona said: “We went to a wedding last year in July in Scotland and Graham was up dancing. And yet by August he struggled to stand up."

Graham, she said, would play golf and cricket with his friends and did not have any major health problems before. She added: “It hits you very unexpectedly."

With little awareness about MND, Graham and Mona had to carry out a lot of research about the condition themselves.

Graham said: “I didn’t know very much about it, but I knew that it was a disease with no cure. I have read certain things since then which aren’t supposedly great."

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According to the NHS, MND progressively damages parts of the nervous system that leads to muscle weakness. Slurred speech, twitches and difficulty swallowing are described as other symptoms.

MND Association claims that some people also get “changes to their thinking and behaviour”, but “the disease affects everyone differently.”

Rob Burrow, a popular former rugby player, was diagnosed with it in 2019 and now uses a wheelchair. 

Mona added that she “could not believe” that there’s “more and more people” diagnosed with MND but “they are not being educated”.  

Her mother, she said, used to be a nurse and she helped put them in touch with a support group in Gidea Park. But she felt there are not many resources available to MND patients through the NHS in her area.

Their house, Mona said, will need to be fitted with a ramp and stairlift - adding to their stress.

The couple organised a charity day at Orsett Golf Club last week that raised more than £11,000. It will be donated towards the cause of providing support to MND patients.

Graham, they shared, is on a trial drug that can delay the disease by a few months but it has been a “really difficult time” for them emotionally.

Their main frustration is not having someone to talk to who “understands what they are going through”.

Mona said: “It's hard to speak to anybody about it because unless you are actually living with it, nobody knows what’s happening."

Graham, however, likes to not dwell on it and “get on” with life.

He added: “Everybody will react differently. I am an outgoing person and I will continue to do what I can.

“I will continue to play golf for as long as I can, but the time will come when I won’t be able to do any of those things”.

His message to the Recorder’s readers, he said, would be to “complete your bucket lists” and to “live your life to the full”.

Mona added: “It changes things. It changes holidays so to speak. We try to do the bucket list now, but when someone can’t walk or do things they normally do, it is very difficult”.