Man bids for motor neurone disease awareness

“MND is a rapidly progressing disease which destroys the lives of the patients as well as the whole family.

By Angela Brooks
July 03, 2012

A TERMINALLY ill man is fighting back and campaigning to raise awareness of his condition, starting with his home town of Horley.

Liam Dwyer, 48, of Balcombe Road, was diagnosed with motor neurone disease (MND) in 2005 after going to see a doctor about minor pain in his knee.

Now unable to walk, he is on a mission to raise the profile of a disease which kills five people every day in the UK.

Mr Dwyer, who has been with his wife Anna for 25 years and has an 18-year-old son, said: “I feel I am on borrowed time at the moment. Nine people [who] I have met since I was diagnosed, all diagnosed after me, have died.

“The doctors can’t tell me how long I will live now. I could be just a cold away from dying.”

MND is a condition which attacks the nerves that control movement, so sufferers can still think and feel but their muscles refuse to work and they are left locked in a failing body, unable to move, walk or talk.

Mr Dwyer recently fronted a campaign for the MND Association (MNDA) called ‘June – A Month for Optimism’, which aimed to raise awareness and money to one day find a cure.

His efforts secured poster spaces in five areas on Southern Railway’s network, including in Horley – and Mr Dwyer said his dealings with the rail firm meant he could now text his journey details to staff at the station, enabling them to get the ramps ready for him and not delay any other passengers.

He said: “I can now turn up at any time and get a train from Horley station just like anyone who is an able-bodied person. I now use the train over my car, I am lucky to be able to do this as my torso is still so strong.

“MND is a rapidly progressing disease which destroys the lives of the patients as well as the whole family.

“The only way I could explain this devastating disease is [that] I am going to be left like a vegetable with a perfect brain.

“I consider myself lucky – although not being able to walk, talk, carry out basic hygiene tasks and dress myself, I still have most of my upper body strength.”

An MND Charter has been set up and now has more than 1,100 signatures, and through contact from Mr Dwyer it has received support from Horley town councillor Celia Austin and county councillor Sally Marks.

The aim of the charter is “to make sure all people with MND receive the right care, in the right place, at the right time” and also to “ensure the rights of people with MND and their carers are recognised and respected”.

Mr Dwyer has also met Professor Stephen Hawking, who has been living with the disease for the past five decades, at the MNDA Research Foundation Reception in London.

He said: “I asked him how he copes with MND and he said by staying positive and keeping the mind active. What a lot of people don’t see is that man has nothing, only his brain, and has had to live for five decades with this devastating disease.”

When asked about the future, Mr Dwyer said: “The only appointments I now do more than two months in advance is a hospital appointment.

“What I would love to see is a prime-time TV advertisement to raise the much needed funds to raise awareness for this devastating disease to get the funding to find a cure for people who are going to follow me.

“I would not wish this disease on anyone or their families.”

One Response to Man bids for motor neurone disease awareness

  1. Barry Simkins says:

    Hope all go’s well. Take care.

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