Defying limits and inspiring change

From diagnosis to determination

When Phillipa MacDonald was diagnosed with motor neurone disease (MND) on her 55th birthday, her world changed overnight. Once a practice nurse and competitive bodybuilder, she suddenly faced the challenges of progressive bulbar palsy (PBP), a form of MND that affects speech and mobility.

Determined to raise awareness and support for others living with MND, Phillipa took part in the Walk to Defeat MND, setting a modest goal of $500. What happened next was extraordinary—her fundraising efforts skyrocketed, making her the top individual fundraiser with $8,242 raised, while her team contributed an incredible $13,297. Nearly 200 people joined her at Lake Rotokare, turning her local event into an inspiring show of community and generosity.

In this article, Phillipa shares her journey with MND, the challenges of living with PBP, and how the overwhelming support from her family, friends, and the wider community has given her a renewed sense of purpose.

A life transformed by MND

At 55, Phillipa MacDonald was living an active and independent life. A practice nurse in Hāwera, she was preparing for her sixth bodybuilding competition, embracing the discipline of strength training, strict nutrition, and pushing herself beyond her comfort zone. She loved the outdoors, regularly tramping Taranaki’s mountain tracks and Lake Rotokare, and dedicated time to caring for her mother in a rest home.

But in early 2024, something changed. Fatigue set in, her muscles began twitching, and her speech started to shift. After reading about a newly formed MND support group in Taranaki, she recognised the symptoms. A GP visit led to a neurology referral, and on her 55th birthday, Phillipa was diagnosed with motor neurone disease (MND).

“Life now looks nothing like it did a year ago.”

Once fiercely independent, Phillipa now relies on a walker, power chair, and daily carers. She can no longer speak and depends on assistive technology to communicate. The shift has been devastating for her and her family, but in true Phillipa fashion, she has channelled her energy into raising awareness and advocating for others with MND.

Raising awareness through the Walk to Defeat MND

Despite her diagnosis, Phillipa was determined to make a difference. When she first shared a post about the Walk to Defeat MND, her trainer and husband immediately pledged their support. The momentum grew from there.

“I wanted to spread the word about MND. It’s a rare disease, but it has touched so many lives,” she says.

What started as a small goal of raising $500 quickly became something much bigger. Nearly 200 people turned up to support her walk at Lake Rotokare, raising more than $11,000 for Motor Neurone Disease New Zealand.

Phillipa herself was able to reach the pontoon at the lake, thanks to an accessible track designed for wheelchairs and walkers—a special moment in a place that had once been a favourite walking spot.

“I had no strategy—the fundraising just took off, and I was a passenger on the journey.”

She was overwhelmed by the generosity of those around her. A young girl dedicated her half-marathon run to the cause. A friend who couldn’t attend the walk bought merchandise and held her own walk.

“It was humbling to see so many people rallying around us.”

Living with Progressive Bulbar Palsy (PBP)

Phillipa lives with progressive bulbar palsy (PBP), a form of MND that primarily affects speech and swallowing. While the physical challenges are difficult, one of the hardest aspects has been how people communicate with her. “My brain still works, and so do my ears. There’s no need to speak to me as if I’m deaf or have an intellectual disability,” she says. “I just need time to respond using my communication device.”

She hopes to educate others on interacting respectfully with people living with MND, encouraging patience and understanding.

A new perspective on life

Phillipa’s fundraising success and the support from her community have left a lasting impact.

“My family and friends weren’t surprised—they reminded me I had inspired people throughout my life.”

From bodybuilding to fundraising, Phillipa’s drive has always been about pushing limits—not for recognition, but to challenge herself.

“I never set out to raise the most money, but it happened. I never set out to inspire people, but I did.”

Her diagnosis has given her a new outlook on life.

“The way I see it, I’ve been given a second chance. The day I was diagnosed, I could have been in a fatal car accident—no second chance there. But this way, I have time. I get to have a say in my final farewell and the journey I take there. How amazing is that?”

Phillipa’s journey is a testament to resilience, community, and the power of fundraising. Her efforts have helped raise awareness of MND, and she hopes to continue making a difference for those diagnosed in the future. While this year’s Walk to Defeat MND has ended, the need for support remains.

💙 You can still donate to support vital MND research and services at www.mndwalk.org.nz