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What’s it like to… is a fortnightly column where New Zealanders from all walks of life share first-hand experiences. Here, Dr Natalie Gauld ONZM, a self-employed pharmacist working on access to medicines, talks about living with motor neurone disease.
Motor neurone disease (MND) is insidious, and my first sign was muscle weakness. In 2019, I couldn’t lift the kayak onto the car, and I was slower than others walking or cycling up hills. My husband said I needed an e-bike. I thought, I just need to try harder.
The next year I struggled balancing to put on tights, and to apply eye makeup. I thought it was because I was out of the habit after Covid lockdowns. I developed muscle cramps in weird places which I put down to my low carb diet for my type 1 diabetes. The cramps worsened despite trying different things to help them.
In September 2021, I fell over while running. Then I had a button I couldn’t undo. I Googled it and I saw MND.
By then I was getting muscle fasciculations. I saw the first neurologist I could get into. I was waiting in the car, watching my muscles twitch. His examination showed hand, shoulder and foot weakness. I had no idea I was so weak. I asked, could it be MND? He said no, because I’d presented symmetrically and MND presents on one side, but I was not reassured.
Testing showed upper and motor neuron deficiencies. The upper neurons go from the brain to the brain stem or down the spine and the lower ones go from the spine to muscles.
In March 2022, I saw another neurologist. I sat in her waiting room devastated, sure the diagnosis would be MND, and it was, the amyotrophic lateral sclerosis (ALS) variant of MND.
That first month was hell. Telling my family was horrendous. It’s a grieving process for everyone. First to go are the hopes and dreams of you and your family. There is no cure, and the disease is severely disabling and terminal.
With my MND diagnosis, I wanted sympathy, for people to say, “I’m so sorry to hear this.” It’s dreadful when people say nothing. Some people I’ve connected well with professionally or personally never contact me - as if I am dead already. Others are amazingly supportive, giving me a boost when they walk with me, catch up for a cuppa, send a nice email or text, or donate to my fundraising for MND NZ.
It’s expensive, having MND. You’ve got to prepare for tetraplegia but there is no ACC funding (income and house modifications) as you would get from paralysis from an accident. Your carpets will be ripped up by your power wheelchair. Your bathroom needs changing. Your bedroom needs space to get a power wheelchair around it. Your doorways will be too narrow and stairs problematic.
Government funding for house modifications is limited to $8076 (providing life expectancy is at least two to three years). This amount hasn’t changed in well over 10 years and GST on house modifications can be greater than the government contribution.
With means testing, more funding could be available but it is difficult to get what is needed. I’m lucky to be still working but many people stop working quickly with loss of function.
Families affected by MND can have huge financial stress while managing progressive disability and a terminal diagnosis. I know someone whose self-funded wheelchair van with 500,000km mileage had broken down and to attend his parent’s funeral he had to borrow someone’s brand-new ACC-funded Mercedes van with a much better set-up than his.
Patients and their families need a voice, support and research in NZ, so I am pleased to be working part-time with the team at MND NZ as a research adviser and best practice advocate.
Two neurologists told me they’re amazed I can work at MND NZ with this diagnosis. I’m confronted regularly with what is ahead for me. But work makes me feel normal and I love working with clever people who also want to make a difference. You can do so much on Zoom these days.
I’ve had so much to do with the health system and trying to persuade change, so to be at MND NZ and trying to influence things is really good. MND is so challenging and relentless – we want to make the most of the lives people have. Having to fight for what you need is not the best use of time. It’s incredibly negative and time consuming and some people don’t know how to.
Every week, I lose more function, and something becomes harder to do. You adjust and you do it this way, then you adjust and you do it that way, then you adjust to not doing it at all. It’s a huge burden on your family.
I now walk with two sticks, short distances only. I’m scared to walk on concrete after a bad fall, so I go to the park to keep my steps up on grass, in between rests. I got an electric wheelchair early because approval and ordering takes time. After hiding it in the garage while I dealt with it psychologically, I’ve started using it for safety.
I’m living with MND, not fighting it. That’s a waste of my energy. I’m doing the best I can with the time I have. I deliberately enjoy the little things in life now. I am lucky to have supportive family, friends and colleagues who make this journey so much more bearable.
I did not expect to have all the fun, laughter and great experiences since diagnosis - a night in the Sahara, speaking at a conference in Paris, laughing with friends until tears roll down my face, and work achievements.
In March, I celebrated my second anniversary of the diagnosis. I rode 54km of the West Coast Wilderness trail in my three-wheeler with my friends, husband and the trail manager, being filmed for the West Coast Wilderness Trail accessibility page, having a complete and utter ball. It was gorgeous and so much fun.
More about MND
MND is a group of neurological conditions with a lifetime risk of 1 in 300. NZ has one of the highest rates of MND in the world, causing a third as many deaths a year as the road toll.
The most common form is ALS (amyotrophic lateral sclerosis). In about 90% of people, the disease isn’t genetic, as in Gauld’s case. She says research indicates the median survival for those with the ALS variant is around 30 months from the first symptoms.
Some 10-20% of people survive more than five years and 5-10% survive more than 10 years. The disease is extremely debilitating with loss of ability to move muscles. Progression results in wheelchair use and complete reliance on others, using eye gaze to communicate (like scientist Stephen Hawking) and breathing equipment.
Dr Natalie Gauld has honorary roles in the Department of Paediatrics and School of Pharmacy at the University of Auckland and is the research adviser and best practice advocate for MND New Zealand.
