How Mastering Mountains Supports Adventurers with Neurological Disease
Nick Allen founded and runs the Mastering Mountains Charitable Trust.
By Hudson Brown
Article summary
- Despite being diagnosed with primary progressive multiple sclerosis (PPMS) at 24, New Zealand adventurer Nick Allen defied the odds and climbed a 6000-metre peak in the Himalayas, marking the culmination of his rehabilitation journey.
- In 2015, Allen founded Mastering Mountains, a charitable trust supporting people with neurological conditions, providing grants to help them pursue outdoor adventures and build a supportive community.
- Allen, now managing his own condition of functional neurological disorder (FND), continues to lead Mastering Mountains, expanding its grants and transforming perceptions of what people with neurological diseases can achieve through goal-setting and outdoor exploration.
Despite lifelong struggles with neurological disease, New Zealand-based adventurer Nick Allen has achieved incredible things.
Since 2015, the charitable trust he founded called Mastering Mountains – which is dedicated to helping people with neurological disease explore the outdoors – has helped others reclaim their sense of adventure and self.
Leaving behind daily stresses for an outdoor adventure is how many of us connect with nature and community.
While making tracks for a trailhead is easy for some, this kind of recreation can be almost impossible for people with neurological disorders.
Allen aims to challenge this.
A passionate adventurer since childhood, his challenges and successes have given him the perspective and experience needed to help others.
Instilled with an intrepid attitude from a young age, much of his free time involved tramping or climbing up mountains in the landscape surrounding his family’s home in Ararimu – about an hour’s drive south of Auckland.
Drawing inspiration from a poster of Mount Everest pinned above his bed, Allen enjoyed a challenge as a teen, such as cycling up to 400 kilometres a week.
Yet as his energetic adolescence gave way to early adulthood, he began experiencing worrying health issues, from debilitating fatigue to chronic pain.
At first, he thought he simply wasn’t fit enough for his outdoor aspirations, but as his condition worsened, it became clear something more serious was going on.
Following numerous doctor visits, he was eventually diagnosed with primary progressive multiple sclerosis (PPMS) at 24 years old.
“By that point, I was in a mobility scooter and couldn’t get around outside anywhere with stairs or uneven surfaces,” says Allen.
“The neurologist said to me: ‘The prognosis isn’t great – you’ll lose the ability to walk entirely within the next couple of years’.
That was devastating for someone in their mid-20s who loved the outdoors.”
Nick Allen
Despite knowing the journey ahead would be hard, Allen and his family didn’t accept this future.
Instead, he adopted the evidence-based Overcoming MS framework, which encourages lifestyle modifications like a plant-based diet, detailed sleep hygiene and specialist physical rehabilitation.
While progress was slow, after several years, he sold his mobility scooter and graduated from “tiny hikes” to longer adventures with an exhilarating goal in mind.
“In 2015, I went to the Himalayas to climb a 6000-metre peak, which was the culmination of my rehab journey,” says Allen.
This achievement saw Allen summit Imje Tse, also known as Island Peak, rising to 6189 metres in the Everest region of Nepal.
During the same trip, he also reached Everest Base Camp – a bucket-list achievement for any would-be adventurer.
While he had already explored the idea of Mastering Mountains, the success of this trip helped him raise the $10,000 needed to kickstart the organisation’s pair of grants.
Mastering Mountains member Jodie Leqeta at Hunua Ranges with her brother.
Open to people with multiple sclerosis (MS) and functional neurological disorder (FND), planning self-directed outdoor adventures, the ‘Mastering Mountains Grant’ supports single-day outdoor goals, while the ‘Mastering Mountains Expedition Grant’ contributes to multi-day outdoor adventures that involve at least one other person.
Aimed at addressing the hurdles people with neurological conditions experience when exploring the outdoors, the fund primarily goes towards rehabilitation costs, such as personal trainers and neurophysio consultations.
However, applicants for the Expedition Grant can also receive funding for trekking gear and equipment, as well as for food, access and accommodation costs.
Importantly, the grant also gives adventurers with neurological conditions communal support through regular chats and mentor services with kindred explorers.
“I basically lost my community when I was diagnosed,” says Allen.
“There was also nobody I could find who was getting outdoors to a high-ish level who had a neurological disability. “A big part of starting Mastering Mountains was about creating community, where people could find support for getting outdoors alongside people who understood what they’re going through.”
With 16 grants awarded since the organisation’s launch in 2015, there’s no shortage of success stories.
Mastering Mountains member Steph Nierstenhoefer on Milford Track.
Mastering Mountains supported Katy Glenie, an accomplished mountaineer who was diagnosed with MS in 2019, for about 14 months.
At first, she could only walk for an hour on a flat surface. Yet with the grant’s support, she ultimately climbed to the 3040-metre summit of the Minarets in New Zealand’s Southern Alps.
This accomplishment helped Katy to rediscover her sense of self and understand what her body was still capable of.
Nick Allen
While Allen’s perseverance and commitment have seen him achieve incredible things, he’s also experienced significant setbacks.
Following his landmark Nepal trip, he faced worsening neurological symptoms that made less and less sense within the context of MS.
In 2019, he was diagnosed with FND instead – a linked but not widely known condition with limited support.
Despite symptoms like chronic pain, numbness, balance dysfunction, brain fog and more, in some cases, his doctors had never heard of it.
“I searched on Amazon to look for books about FND when I was diagnosed – there were only about 10 academic texts.
I’d lived most of my life thinking I had a well-known condition like MS, when I actually had something with little research on what makes the symptoms better or worse.
“That was the most jarring thing about it,” explains Allen.
Today, he continues to explore the outdoors and lead Mastering Mountains, navigating the boom and bust pattern of conditions like MS and FND, where physical activity often results in lasting fatigue and pain.
Now he’s looking to expand the grant to other neurological disorders, like chronic fatigue and cerebral palsy.
Transforming perceptions about what people with these conditions can achieve, he believes having a goal – from a short walk to reaching a soaring summit – is crucial to maintaining hope when living with an isolating neurological disease.
“With an inspired goal that stretches into the future, you really have to hone those skills and develop those strategies that set you up for the long term,” says Allen.
“For us, that’s one of the most important parts of this whole thing – helping people learn the skills and strategies needed for maintaining their health.
“The goal is the vehicle for that learning.”
About the Author
You can learn more about Hudson Brown at his website.