Brave mother Nicky Wallis has vowed to lead a fulfilling life for her family, despite suffering with MND.

Two years ago, Lily Wallis started taking ballet lessons. But, when Lily's mum Nicky attempted to show her daughter the way her toes should point forward in ballet, the mum-of-two found she couldn't move her feet to perform the action properly.

Not only did Nicky have difficulty moving her feet, she was also suffering with aches and pains in her back and shoulders.

Nicky consulted her family doctor to determine the cause, and this was followed by six months of testing. She had X-rays, magnetic imaging scans and measurements of the nerves and muscles in her body.

Once just about every other condition under the sun was excluded, Nicky was told she had the neurological condition motor neurone disease (MND).

‘At first, the nature of the disease didn't hit me,' Nicky, 34, explains. ‘My brother and his wife had just lost their son at six weeks and we were trying to help them through their loss and grief.

‘When I realised there was no cure for MND, I was devastated. I had no way of knowing how long I would be around.'

 

Coming to grips

The hardest thing for Nicky was imagining the way life would be for her two children without her. As well as Lily, now six, she and husband Shane have a son, four-year-old Bailey.

‘Shane and I live for the moment,' Nicky says of their new outlook. ‘We try to have fun as a family and we pack more into life than we ever did before.'

Nicky now notices every change in her body. Currently, she can't walk and uses a wheelchair. ‘In fact, we've hired three other wheelchairs, each for a particular task I need to do.'

As well as working, 36-year-old Shane has to do a lot around the family home.

‘We have a two-storey house, and the children's bedrooms and bathroom are upstairs,' Nicky says.

‘Shane puts them in the bath, then they come down to me. I dry their hair, put on their pyjamas and read them bedtime stories. I make every effort to be part of their lives.'

 

Adapting to a new life

This year, Lily started school, and the staff have been fantastic,' she says. ‘I'm on the school council and yesterday I was on canteen duty. Lily was so proud. She brought her friends to meet me.'

Nicky feels reasonable for 90 per cent of the time, but the other 10 per cent is tough going.

‘I get sad and feel sorry for myself. Little things set me off. I can fall into a downward spiral, but I don't get depressed,' she explains. ‘I've changed a lot since I was diagnosed.

‘I know what's important in life, and that's my family. MND has taken away a lot of choices about the type of person I want to be physically, but it can't change what's inside me.

‘I'm still full of life, laughter and love,' she adds. ‘And as long as I'm here I'll continue to share that with my family and friends.'

 

What you need to know about MND

Sufferers can feel as if they're trapped in a body that won't work properly.

 

Here are some facts to shed light on the condition

MND attacks motor neurones, the nerve cells controlling the movement of voluntary muscles that allow you to move, speak and breathe. Without nervous stimulation the muscles weaken and waste away - and, finally, this results in paralysis.

The weakness is often first felt in the hands or the feet. Sometimes an early sign is a difficulty in swallowing or a speech slur. As muscles become paralysed, they twitch and cramps may occur.

While MND affects the muscles, it leaves the intellect and memory alone as well as the senses of sight, hearing, touch, taste and smell.

The cause of MND is unknown, but genetic factors may play a role. We know one thing - MND is not contagious. It affects everybody differently and usually progresses quickly. The average life expectancy is three to five years after diagnosis.

MND occurs all around the world, with most sufferers being diagnosed in their 50s and 60s.

This condition causes high levels of disability. People who suffer from MND may need help with simple tasks such as feeding, communicating with family and friends, going to the bathroom and, as in Nicky's case, simply getting around the house.

Leisurely pursuits

Many studies have found that a hobby boosts the quality of our health. Even a leisurely activity, such as playing dominoes, helps reduce stress and may assist with the distraction of everyday concerns, such as financial worries. It also helps you relax, and the flow-on effect of calmness is a lowering of blood pressure.

For MND sufferers, recreational activities - especially those they enjoyed doing before being diagnosed - are vital. All it takes is a little more planning.

Board games and card games are a great way for friends and family to spend a day. To make it easier, use large cards or a cardholder, and play games that have big playing pieces, such as dominoes and draughts.

If someone with MND enjoys reading, use an adjustable table or bookstand, and a non-slip mat to help stop the book slipping. If an MND sufferer used to play sport, there's no need for them to give it up completely. If their ability to play is limited, they can maintain contact with the club or organisation, as the interaction and support provides health benefits. 

Portrait by Portrait Place, Southland shopping centre, Cheltenham, V. 

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