The date 1 March 2022 will forever be etched in the memory of Dr Natalie Gauld as it’s the devastating day she was told she had motor neurone disease.
“The first month after my diagnosis was horrendous,” the Aucklander recalls. “My family and I grieved for what we would be losing. Then after a few weeks, I thought, ‘I’m not going to get in a wheelchair and regret wasting time feeling sorry for myself!’
“So I got on with making the most of my mobility, and having fun and different experiences. I try to take one day at a time and focus on positives. It’s good for me and it’s better for others that way.”
The impact of her illness on her family, including husband Matt, and daughters Lauren, 23, and Brenna, 21, is something that worries Natalie. She was awarded the New Zealand Order of Merit for her services to health and pharmacy.
“My husband and I are in our fifties and should be enjoying our freedom after years of bringing up kids. Instead, he’s having to support me through my increasing disability. And I feel bad I won’t be there for our daughters in the future.”
A shared sense of humour is something that keeps them all going, she says. “Our family has black jokes about the disease and I love catching up with friends for a good laugh.”
Clues things were amiss started in 2019. The formerly active pharmacist noticed some arm weakness and an inability to keep up with her friends when walking.
“The next year, I lost my balance putting on tights and found applying eye makeup tricky. I had muscle cramps and my hands would sometimes cramp up.”
While being treated for an infected graze after a fall while out for a run, Natalie mentioned her various symptoms to her doctor, with a range of tests and referrals to neurologists leading to her diagnosis.
Motor neurone disease (MND) is a devastating illness that eventually robs people of everything. It traps them inside a body that no longer works, unable to speak, move and finally breathe.
It’s a terrifying fate, Natalie explains. “You’re dealing with a terminal diagnosis, continual loss of function, fear of falling and becoming increasingly dependent on others. It’s a big deal facing being spoon-fed and washed by others, not even being able to go to the toilet on your own.
“Then there are also the financial implications. Losing income, funding equipment, like a vehicle for a wheelchair, and modifying or shifting house to meet the needs of the different stages of progression of the disease. I know people with MND who are really struggling financially.”
Natalie faces new challenges and adaptations almost every week, including a continual loss of function and increasing loss of independence.
Natalie also has type 1 diabetes and says the self-care protocols she already had in place were good preparation for MND, particularly when it comes to looking after her mental health and finding things to enjoy.
She loves the freedom of her three-wheeler bike, which she gets out on most days.
“I ride to see godwits, wrybills and other wading birds around Māngere, and do longer rides, like the Twin Coast Trail in Northland, which I did over Anzac weekend. I also did part of the Te Awa River Ride in Hamilton with friends in May. Being outdoors makes me happy.”
In her professional life, Natalie continues to work on innovative projects. These have also provided her with time out from thinking about MND.
“I also work part-time alongside a great team at MND New Zealand. I encourage the use of the best practice recommendations for care of patients, and help to bring clinical trials and other research to New Zealand.”
Recent studies reveal New Zealand has one of the highest rates of MND in the world. We have more than 400 people living with the disease at any given time. Throughout June, MND New Zealand is holding its Cuppa Tea for MND and MND Ice Bucket Challenge fundraising initiatives with the aim to encourage Kiwis to learn more about the condition.
“I hope these initiatives will also help policymakers understand how uneven the playing field is when it comes to funding tetraplegia from MND versus an accident,” she explains.
To people recently diagnosed with MND, Natalie suggests making lots of memories and appreciating the little things in life. “Tell friends and family how you are doing, and what you might need help with. Get in touch with your MND New Zealand support advisor early.”
And for people wanting to offer support to someone facing MND or another terminal illness but who don’t know what to say?
Natalie advises, “Just send a text or an email telling them the truth. That you don’t know what to say, but you’re sad to hear of their condition and are thinking of them. That’s so much better than saying nothing.”
June is MND Action Month. To find out more or to donate, visit mnd.org.nz.
