'˜It has made us realise the value of life'

Many people would struggle to come to terms with such devastating news.

But when 53-year-old Lee Millard was diagnosed with motor neurone disease two years ago, it gave him a newfound appreciation of life.

He wakes up every day and appreciates the blue sky, the sun and the sound of the birds.

He also enjoys the taste of freshly-made coffee and a good meal with his wife, Jean.

He spends time with his two adorable dogs, shih tzus Poppy and Dora, and sees life for what it really is for; living.

Lee, from Westbourne near Emsworth, first noticed something wasn’t right when he started to feel twinges when he went running.

‘I was a regular runner. I used to run five miles, four times a week,’ he says.

‘My right leg at the start of a run used to flick like it was stiff. It went away and I didn’t think anything of it. I was still able to run.

‘After about three months it was still there so I went to the doctor. He said he didn’t think there was anything wrong, so he sent me to see a physio.

‘The physio spotted that my reflex was too strong. I saw a neurologist within a week.’

Not many people know about MND. It’s a rapidly progressive disease which affects the brain and the spinal cord, attacking the nerves that control movement, meaning that muscles no longer work.

It can affect how you walk, talk, eat, drink and breathe.

It affects up to 5,000 adults in the UK at any one time and six people are diagnosed with the disease every day.

It takes around a year to diagnose MND because there is no test for the disease. Doctors have to carry out scans and exclude all other possible forms of illness before they can confirm it is MND.

In May 2014, two years later, Lee was given the devastating news that he had the disease.

Now, he struggles to walk too far and his speech is slow.

He gave up his job as a salesman at IBM shortly after he was diagnosed.

‘I worked up until the diagnosis and then I decided life is too short,’ he says.

‘My wife took a year off as well because we didn’t know what would happen. It could have been all over within six months.

‘As it happens I am still here and I’m okay. It appears I am on a slow decline.

‘My voice is slowing down and it will affect everything in the end, but I don’t live that way. I live for the day,’ he says, with a beaming smile.

‘By the time I got the diagnosis, I already knew what it was. It was a shock because there’s no cure and it’s progressive.

‘There’s nothing you can do to prevent it – diet, fitness, it doesn’t make any difference.

‘Obviously I have dark days, but I just live every day. In the time since I have been diagnosed I have had three friends die of other things. It just reiterates that life is about now.’

Poppy and Dora have become a big part of Lee’s life. They help to keep him company as he spends so much time in his house alone nowadays.

‘My wife always wanted a dog, but we were both working and couldn’t give them the time they needed,’ he says.

‘So when I stopped working I thought we could do this.

‘They are brilliant. I absolutely adore them. They are good fun and we have got them well-trained.’

MND is a rare disease – but it’s not as rare as people think. Statistics show that there is a one-in-400 chance of getting it in your lifetime.

Typically, sufferers live between two and five years, although the most famous person to have the disease has proved doctors wrong and is still fighting it now.

Professor Stephen Hawking, who was diagnosed in 1963 and was told he had two years to live, has a very unusual case.

Confined to a wheelchair and only able to communicate through a computer, he shares similarities with Lee. Both suffer from the disease yet they are both determined to try to live as normal a life as possible.

‘It doesn’t matter how rich or poor you are. It can happen at any age, but typically at about 50,’ Lee adds.

‘There is nothing you can do.

‘I have got involved in some research. I may have stopped working but I am motivated and I want to make a difference and keep my mind going.

‘Typically people with this disease are dead within two years. It’s pretty drastic. But I don’t get down about it.

‘I think the NHS is getting more understanding of it. A lot of people just go and shut the door, they shut themselves away.

‘But I am a firm believer in using it or losing it.

‘I still exercise, I go to the gym. There is evidence to say that keeping your mind going can make a real difference. It is hard to be positive about a disease that will kill you. But it’s about not being negative.’

Lee and his wife Jean, who have a 24-year-old son, spend a lot of time together doing things at the weekend, when she’s not at work. They want to make the most of the time they have together.

‘I believe it affects my wife more than me,’ Lee adds.

‘People say that people are brave but I have no choice. I think it’s made us both realise the value of life.

‘We don’t know how the future is going to unravel.

‘Some people with this disease plan to the nth degree and plan to move house and get things done.

‘But we don’t live like that. We do a little bit of planning. We’ve had a ramp put up for when I will need a wheelchair. But most of the time we just live.

‘The important message is to try and live as normal a life as possible.’

RAISING AWARENESS

Lee is campaigning to raise awareness of MND.

One of his projects is organising a fundraising night to support the MNDA (Motor Neurone Disease Association) as June marks the charity’s awareness month.

Lee has organised a fundraiser at the Robin Hood Inn at Rowlands Castle on Saturday from 8.30pm.

It will feature live music and a live auction, offering top prizes including a signed England rugby shirt.

Meanwhile, Lee is also doing his own fundraising in the fightback against the disease.

He is aiming to raise £2,000 to help fund research and also to enable the charity to raise awareness of the disease, so others know more about it.

To make a donation and to find out more information, please visit justgiving.com/fundraising/1-way-or-another

To find out more about Lee and to read his blog, please visit onein400.com/blog