‘An amazing journey’: $20K raised for motor neurone disease

CORRECTION: One of the anecdotes about the financial pressure MND places on patients has been corrected. Pharmacy Today apologises for the initial error.

‘An amazing journey’: $20K raised for motor neurone disease

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Natalie Gauld on west coast wilderness trail
Natalie Gauld (centre) with friends while riding the West Coast Wilderness Trail in March [Image: Supplied]

I’ve had an amazing journey, it’s been really, really cool. When I’m cycling, my husband often rides along behind me, and he says everyone who goes past and sees me is smiling

Pharmacy sector trailblazer Natalie Gauld has raised over $20,000 for Motor Neurone Disease New Zealand.

Dr Gauld found out she had motor neurone disease in March 2022. But despite being diagnosed with a terminal disease, “life hasn’t stopped”.

Over the past 22 months, Dr Gauld has been tearing up cycle trails around Aotearoa on her modified three-wheel bike.

She has cycled numerous tracks with her husband Matt and has done a combined total of 2000km on her bike in the last 12 months, the equivalent of cycling from Cape Reinga to Invercargill.

While cycling the West Coast Wilderness Trail, she was involved in filming an accessibility guide video to help people with limited mobility thinking of doing the trail.

Through the cycling she has been raising awareness and funds for the charity Motor Neurone Disease New Zealand.

An amazing journey 

To date, her online fundraising efforts have raised $20,263. Dr Gauld intends to keep cycling for as long as her condition allows it, and people can still donate to the cause online.

“I’ve had an amazing journey, it’s been really, really cool. When I’m cycling, my husband often rides along behind me, and he says everyone who goes past and sees me is smiling.”

Dr Gauld is very grateful to the pharmacists who helped her get over the $20,000 mark, she says, after a link to her fundraiser was posted in the NZ Community Pharmacy Chat Facebook page recently.

She also got a big surprise recently when Auckland pharmacists Vicky Chan, Chris Leung and Derek Lau sent a video of their ice-bucket challenge to raise awareness for MND.

“That these guys would tip freezing water and lumps of ice on themselves in the middle of winter to show their support for me and the fundraising for MND NZ, and the kind words and donations that came following that, meant an enormous amount to me.”

Multifaceted challenges with MND  

Dr Gauld’s MND appears to be progressing slowly. She can still move without always needing a wheelchair. But she constantly needs to take care not to fall over, and small children and dogs running around, and even just uneven pavement, create a real risk of injury.

She has had to give up her wardrobe of beautiful clothes because she can no longer put them on, and buy new clothes which, she says, make her “look like a sack of potatoes”.

The disease is one of the worst for placing a financial burden on the families of those affected, Dr Gauld says. Patients end up needing new clothes, modifications to their homes, new shoes and more. And in most cases, they will have lost their income.

“It’s continual loss. It starts with your hopes and dreams, then it goes on to your money, then it goes on to your functions,” she says.

Government assistance lacking 

While a patient who became disabled due to an accident would have things like house modifications and mobility aiding devices paid for by ACC, patients with MND receive less government assistance.

Dr Gauld believes she is fortunate – if anything to do with getting diagnosed with MND can be described as fortunate – to have got the disease later in life when her children are older and do not need so much financial support. But she has met many others who are not so lucky.

One man with MND she knows nearly missed out on attending his father's funeral because his self-funded old wheelchair van (odometer reading 500,000km) was getting repaired. In the end, he managed to attend but only because he was able to borrow someone else’s brand new ACC-funded Mercedes wheelchair van.

She knows another patient whose partner is working three jobs to support them.

Disabilities not catered for in society 

Dr Gauld has also been learning how inaccessible New Zealand is for people with disabilities.

“Even though we have a lot of people who are disabled in society, our society is not well set up for it.”

People with MND and other terminal illnesses desperately need more support from the Government, she says.

“Motor Neurone Disease New Zealand plays a very significant role in the lives of people with MND, and they really need this support, advocacy and research provided by this organisation. A big thanks to all who have contributed, and of course it is not too late, they still can contribute or send a positive message.”