Raising awareness of Motor Neurone Disease: Saffron Walden father speaks of life with the disease ahead of charity fund-raising gig

Jason and his son, Kodi

Jason and his son, Kodi - Credit: Archant

THERE are many basic daily activities most of us take for granted. Being able to make a cup of tea or carry shopping bags, for instance. For Jason Newman, those simple tasks have become impossible.

Mr Newman, of Tukes Way, Saffron Walden, was diagnosed with Motor Neurone Disease (MND) two years ago, and he has gone from running his own successful groundworks business to relying on others for most things.

As a result, he is desperate to raise people’s awareness of the condition, and has organised a charity fund-raising music gig in Saffron Walden later this month.

He said: “I love music and been around that scene all my life, and wanted to raise awareness, so this seemed a natural progression. If we can drum up some money for the charity, that would be great, too.”

All proceeds will go to the MND Association (MNDA), the UK’s only charity to fund and promote global research into the illness.

Mr Newman, who has a 10-month-old son Kodi, said: “I’m overwhelmed with the support I have received, and surprised at the number of people who have come on board because MND has impacted on their life in some way. Many have said they have relatives or friends who have it.”

MND is a progressive disease with no cure. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.

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Yet it can be extremely difficult to diagnose. It is comparatively rare and the early symptoms can be slight, such as clumsiness, mild weakness or slightly slurred speech, all of which can be attributed to other reasons.

Therefore, it can be some time before someone feels it necessary to see a GP. That was the case for Mr Newman.

He said: “I was laying a brick one day and it kept falling out of my hands. I was losing my grip and had twitches at the tops of my arms. I thought it was because I was working so hard – but it wasn’t getting better.

“I didn’t go to the doctor for a while but within days of doing so I was having MRI and EMG scans. The prognosis came six weeks later and my reaction was how most people might have been – I asked “what’s that?’ It came as a big shock.

“For a year I was fine but I have had some stress in my life in recent months and that has really amplified the disease – I have deteriorated quite quickly.

“I can’t get back to work and depend on everyone, even leaning on people to get around. But I want to carry on as normal for as long as possible.

“It is the simple tasks that I miss, such as making a cup of tea or carrying the shopping – everything most people take for granted.

“I have a review every three months and take the only medication available – one pill to slow the chemical imbalance down, but it is no wonder drug.

“MND is largely ignored compared with similar neurological conditions such as MS and Parkinson’s, and those and other conditions, in terms of research and funding, get more.

“I certainly don’t begrudge that but it would be good for MND to have a slice of the pie.”

Mr Newman’s goal is to raise awareness locally – starting with the gig.

Music on the night will come from bands Ratz in a Sack and Thaxted-based AliceBand, and there were be a raffle with prizes donated by local businesses.

The event is being held at Saffron Walden Town Football Club, from 7pm-midnight on February 23. Tickets at £10 are available from the football club and the tourist information centre in Market Place.