As part of her training for The Minarets climb, Katy tramped the Routeburn Track in Fiordland earlier this year. Photo / Supplied
It was "the end of life as I know it", says Katy Glenie, when she recounts that terrible neurologist's appointment in 2019.
For an active, outdoorsy 41-year-old with a 2-year-old daughter, Rosie, the words were her worst fears realised.
For weeks the Taupō woman had had pins and needles that started in her hands, along with a lack of sensation. It started in one finger and moved up her hands and arms then began in her feet and moved up the back of her legs.
"Then it became this tight constriction around my chest where I would struggle to breathe if I was doing any exercise."
She had a referral for an MRI, which would show whether there was any inflammation around her nervous system, but it took eight "hideous and really stressful" weeks before the appointment, with her symptoms worsening every day.
Katy suspected what she was experiencing might be multiple sclerosis. But to hear it pronounced officially was devastating.
"I just cried and cried and cried and I was just like 'how do I be a mum, how do I be a parent with a chronic illness?'"
Katy's MS mostly affects her hands, causing pins and needles, weakness and numbness but occasionally dizziness and loss of balance. She can become tired to the point where it's impossible to get up off the couch and sometimes suffers from 'brain fog', finding it hard to make decisions or think of what to say. MS affects people differently so others might get it in their brain or find it affects motor functions like walking or swallowing.
"It's random and it's progressive so that attack on your system will happen for the rest of your life."
There is also no cure although there is medication that for some people can help delay progression.
What is relatively unknown, but also very common, is for people to have episodes of MS before it is ever diagnosed, Katy says. In her case, about six years ago she had double vision for two weeks, which went away by itself.
"The other symptom I had was pins and needles in my legs and feet and then at one stage, I had them running down the backs of my legs. It's a really, really common thing, it's a nerve symptom so it's something that you want to get checked out. "
Following her diagnosis, as well as the prospect of parenting while battling MS, Katy, a freelance writer, also struggled with the thought that she might not be able to enjoy the active pursuits she loves so much.
"My biggest love apart from my family is being in the outdoors, tramping and climbing and being immersed in nature, and does that mean that's all gone?"
She began googling MS, hoping to find people with young families who were still adventuring and engaging positively in life. She came across Nick Allen's story.
Nick runs the Mastering Mountains grant and on the MS NZ website, there is the story of how, with hard work and determination, he trained hard enough to get out of his wheelchair and climb Island Peak in Nepal.
"I was like, 'So someone with MS can climb a mountain, is that right?'" says Katy. "And then I read that he had done it after being in a wheelchair and I was like, 'I'm going to climb.'"
Katy decided that her goal would be to climb a mountain too - The Minarets, a 3040m peak in the Aoraki National Park, a feat she hopes to accomplish in November. The Mastering Mountains grant will help her and her husband, Mike Phethean, who will climb with her, pay for sessions of MS-specific physiotherapy and some of the costs of the expedition.
Although Katy was a climber before her MS diagnosis, she's never climbed as high as The Minarets.
"I've never climbed with MS and one of the major symptoms I get is heat intolerance and that will be a factor for me because when I get hot, all my symptoms go crazy and I get really tired. So that will be a challenge. And the other piece will be there's not a lot of room for going slow so the keep moving bit will be a challenge and how to manage energy levels on a full day of climbing."
Katy says she's not climbing The Minarets for herself. She is doing it for people like herself.
"I said to Nick, 'The reason I want this grant is because I want to do for someone else what you've done for me.' I want them to read a story about a mum with a toddler, with MS, who can climb a mountain.
"I don't want people to think they have to climb a mountain but I want them to think that all this adventure and excitement in life is still there for you. You might engage with it in a different way, it might take you a bit longer but it's still there for you. Your world doesn't have to become small."
Day-to-day, Katy has had to completely rethink her life. She has kept up the same amount of work but has to carefully manage her energy levels.
"I have had to change my lifestyle, be much more careful about managing stress, doing things to keep me healthy, keeping fit and active, eating well, resting well and removing things from my life that are stressful: stressful work, stressful relationships.
She also rushes less and prioritises time with Mike and Rosie, now 4.
"Instead of Rosie being with me and I'm dragging her around doing all this stuff, now Rosie and I are doing a jigsaw or playing with playdough or laughing about a book at the library, so I spend more time on the things that really matter to me."
Katy's goal is to keep her body strong. She tries to keep active with rock climbing, yoga and swimming, which can sometimes be difficult. She has less endurance and MS makes people feel tired and unmotivated.
The hard days can be really hard so Katy is grateful for Mike's support.
"When I'm really tired he's in there helping with Rosie, doing the cooking, helping me to rest by doing other household things, getting home early from work if I need him to."
She has also accessed local support through the Rotorua Taupō branch of the Multiple Sclerosis Society, which has allowed her to connect with other people with MS via a regular coffee group. The society has a support worker who can answer questions, help people navigate support or resources and provide advice around accessing services. It covers Rotorua, Taupō, Tūrangi and Tokoroa and it currently has 83 people on its database, including 33 in Taupō and one in Tūrangi. Sixty of the 83 are women.
"They are really helpful for people and they are a charity so they do need donations in order to be able to provide that service to people in our community," says Katy.
"It has been really hard not having family support locally and that has made me reach out for help more. The result was that I realised that the help is there if you ask for it and people are more than happy to support you but they can't support you if they don't know."
* The causes are not clear but it is a disorder of the central nervous system where areas of scarring are scattered throughout the brain and spinal cord. The scars are the result of patches of inflammation, which damage the myelin sheath covering the nerve fibres and also the nerves themselves.
* It is more common in young adults. Symptoms usually appear between ages 20 and 50 with a peak in the early 30's.
* Women are affected approximately three times more often than men. The prevalence in New Zealand is approximately one per 1000 with the annual incidence being around 134 people per year.
* MS is not contagious or infectious and its course varies from person to person. Some people will only ever experience mild symptoms over their lifetime while others will have relapses followed by incomplete remission when disability may worsen with each relapse.
The Multiple Sclerosis Society of New Zealand is a non-profit organisation formed to meet the needs of New Zealanders with MS, their families and carers and 90 per cent of its income comes from grants and donations. You can support it at its website: www.msnz.org.nz.
Local Democracy Reporting obtained the decision through the court.