Walk 2 D’feet MND fundraising event

A resilient character given the ultimate test

On the last Sunday of this month Wellingtonians will have the chance to walk together to support people suffering from Motor Neurone Disease, or MND. On Sunday 25 September, the Wellington Motor Neurone Association will be holding this year’s Walk 2 D’Feet MND event at the ASB Sports Centre in Kilbirnie. What do you know about MND?

Gerard Neilson had had the life of his dreams. He’d enjoyed 30 years of happy marriage to his wife Glennis. Together they’d raised five healthy children, each successful in their chosen profession and working in various locations around the world. The couple have nine grandchildren, all of whom they see often. And Gerard had carved himself a hugely satisfying career as a road safety engineer.

Through his work, Gerard managed projects all over the world for organisations such as the World Bank, the Asia Development Bank, and AusAID, the agency responsible for managing Australia’s overseas aid programme.

So when Gerard and Glennis decided last year that it was time to ‘come back home’ to New Zealand to semi-retire, the last thing on their minds was that Gerard would fall gravely ill.

Speaking from the couple’s home in Porirua, Glennis remembered when she first noticed something was wrong with Gerard.

‘We were based in Jakarta before we returned. Just before we left, I noticed Gerard had a bit of a limp. He didn’t have any pain, which may sound a relief, but that’s what got me concerned. I thought, ‘no one limps without a reason’. It just didn’t seem right’.

Gerard was 69-years-old when the couple arrived back in New Zealand in August last year. Glennis urged Gerard to see a doctor about his limp.

After a number of tests, the reason for the limp was discovered — and the news was shattering. Gerard was experiencing the first signs of Motor Neurone Disease, or MND.

‘Gerard had always been healthy, his whole life, said Glennis. ‘Having those tests was the first time he’d ever been to hospital. He rowed, he played squash — he’d always been active.’

Emotionally, Gerard is an extremely strong and positive person, traits that had no doubt contributed to his success in life. But this strength of character has been given the ultimate test since his diagnosis.

When he was first diagnosed, Gerard recalled the doctors giving him a worst-case scenario.

‘They said the worst outcome would see me in a wheelchair a year later. And that’s exactly what’s happened.’

Despite his failing health, Gerard’s strength of character shines through. He talked at length about how lucky he feels to have had 69 healthy years before being diagnosed with MND. He spoke of how powerful the support of his family has been, and continues to be. He said he was humbled by the professional and swift work that had gone into every aspect of the new, modified home he and Glennis had built since the diagnosis.

‘I feel I was in a privileged position to be able to have this house built,’ Gerard said. ‘We were lucky to have saved up enough to do it. But once we decided to do it, everyone came on board so well. The builders, the Council, everyone involved pushed to move quickly. And the District Health Services have always anticipated my next level of disability and provided me with the appropriate facilities. People have been amazing.’

While Gerard continues on his uncertain journey — taking each day as it comes — his greatest ally, Glennis, is firmly at his side. She speaks with an air of unwavering courage and tenacity.

‘We’ve done so much and seen so much in our life together. So on that side we both have no regrets. And we’ve also been lucky enough to be able to build this house especially to cater for Gerard .

‘Life changes every day. But we count ourselves lucky for what we’ve had and for the people and support we continue to have.’

Wellingtonians will have their chance to support people living with MND at this year’s annual Walk 2 D'Feet MND event on Sunday 25 September. The event will be held at the ASB Sports Centre in Kilbirnie, and promises to be a fantastic family affair. Registration’s open at 9.30am and the event kicks-off at 10.30am.

Event organiser Sarah Wood said she and her support committee have focused on creating a family event, something for everyone to enjoy and remember.

The Wellington Walk 2 D'Feet MND event involves people walking, wheeling or running a 3km track. It takes place on flat terrain, both around the stadium and on surrounding streets. And Sarah said there’ll be plenty of encouragement to keep people motivated.

‘We’ll have cheerleaders & Hip Hop dances to help with warm up, and heaps of spot prizes, raffles and an auction. We’re planning to make this a great day out for everyone, and all for a terrific cause.’

Wellington won’t be the only city taking part in this year’s Walk 2 D'Feet MND event. Hundreds of people who have been personally affected by MND are expected to join Walk 2 D'Feet MND events in Auckland, Hamilton, Tauranga, Hawkes Bay, Waipukurau, Taupo, Whanganui, Masterton, Wellington, Golden Bay, Christchurch, Hokitika, Dunedin, and Invercargill.

Wellingtonians get their chance to support people with MND

Where: ASB Sports Centre, Kilbirnie

When: Sunday 25 September

What time: Registrations open from 9.30 am. Walk starts at 10.30am.

Details: A 3km walk inside and around the Sports Centre along flat terrain.

Registration: Earlybird (Before Sept 16) $10 for individuals or $20 for a family. After Sept 16 $15 for individuals or $25 for a family – to register go to http://www.walk2dfeetmnd.co.nz

About MND

• Motor neurone disease is the name of a group of diseases that destroy the nerve cells (neurones) that control your muscles. With no nerves to activate them, the muscles you use to walk, talk, hug, hold, speak, and eat gradually stop working. Eventually, you're locked in a body that can no longer move.

• MND can affect anyone. It is an uncommon, but by no means rare disease. MND has a low prevalence because of the short lifespan of those affected.

• In New Zealand in 2011, one in every 202 deaths was caused by MND.

• This year in May, New Zealand-born racing driver Neil Cunningham, a James Bond stunt driver who had appeared as The Stig on TV show Top Gear, died of MND. He was 52 and a father of three. In April, British comedian Ronnie Corbett died of MND.

• The most common type of MND is Amyotrophic Lateral Sclerosis, or ALS. It is known as ALS in America.

• The MND Association of New Zealand (MND NZ) is a small not-for-profit organisation whose main purpose is to ensure that people living with MND have the best quality of life possible, by helping people with MND access the medical expertise and equipment they need, and providing practical and emotional support. MND NZ is dependent upon fundraising and donations to continue its service.

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