Sparring with multiple sclerosis, maybe

CAREER CHANGE: Holly Davis holds one of her painted animal skulls, that of a cow. Holly enjoys singing, playing the piano and painting — pursuits she wants to continue if her health allows. The onset of a neurological condition, thought to be multiple sclerosis, led to her giving up her job in early childhood education. Now she is training to be a SPELD teacher. Pictures by Rebecca Grunwell

What’s it like to be ill and not know why, to have your body disobey your commands, your life turned upside down by a condition that can change its routine? Doctors suspect Holly Davis has multiple sclerosis (MS), a disease of the central nervous system, but they can’t be sure yet. Holly talks to John Gillies about, among other things, the frustration of not knowing what she’s up against . . .

Holly Davis is in a boxing ring with an invisible opponent.

This opponent has taken pot shots at different parts of her body for nearly three years but, try as she might, she has been unable to identify the cause of her pain.

The invisible-boxer analogy comes from a friend who every now and then asks Holly if the opponent has been unveiled yet.

The lack of an identity for her tormentor is not for the want of trying.

Holly has been to doctors and surgeons, and had MRI scans, a lumbar puncture and nerve conduction studies performed, and still the experts can’t be sure. Multiple sclerosis (MS) is suspected, but more evidence is needed to be sure of a diagnosis.

In the meantime, 37-year-old Holly, single mother of eight-year-old son Richy, gets support from family, friends and the Gisborne-East Coast Multiple Sclerosis Society, whose aim is to help those with MS and allied neurological conditions.

While Holly has not had a diagnosis of MS, her symptoms indicate a neurological disorder of some sort and so MS Society field officer Christine Beard is keen to help her.

This is MS Awareness Week, when the Multiple Sclerosis Society of New Zealand highlights the nature of the condition and the help and services available.

For Holly, it helps just being with people who know something of the frustration she feels about the uncertainty over her future restricted movement and pain.

Multiple sclerosis is a progressive disease of the central nervous system and affects movement, sensation and body functions. Symptoms vary considerably in nature and severity, which can make diagnosis a lengthy process. No cure is known but treatment can be effective in managing symptoms.

In Gisborne, the MS Society advocates for its members, organises social gatherings and exercise sessions, and provides supplements shown to be helpful to those with MS.

“It has been like another family,” Holly said.

“Knowing they have been through the diagnostic process, being able to talk about it with them, and seeing older people with MS still walking and functioning . . . it’s all quite uplifting.”

Holly can remember a couple of key dates in her health journey. The first is November 17, 2015: “That was the day my life changed. I was an early childhood teacher in Gisborne and I had been getting a few twinges in my lower back, which I thought was normal wear and tear from my job. But I woke up this day and my whole back seized up and my left leg wasn’t working properly.”

She went to an osteopath but her back remained seized up. Next came a visit to a doctor, an MRI (magnetic resonance imaging) scan that showed two squashed nerves in her lower spine, and a referral to an orthopaedic surgeon in Auckland. He took one look at the problem and said that even if he operated, it wouldn’t fix the problem. He referred Holly to a neurologist who had a full brain and spinal MRI scan done, and found “at least 10 lesions” in her brain.

He did not see her spine as the problem. Rather, he felt she had a functional neurological disorder in which the brain was sending the wrong messages to her body.

The pain in her legs got so bad that she went to the Gisborne Hospital emergency department to seek help. Meanwhile, her GP started running tests and keeping a record of her symptoms. Holly’s arms were weakening; driving for any length of time, she found it hard to grip the steering wheel, and her arms would start “burning and shaking”.

A visit to another doctor followed, with more MRI scans. She was told it looked as if she was having mini-strokes, and at the next appointment, MS was mentioned as a possibility.

The other date that sticks in her mind is December 7, 2015 . . . the day she stopped working.

“They tried to hold my job open as long as possible,” Holly said.

“I started on steroids in early 2016 but I was still in a lot of pain and realised I wouldn’t be able to go back to early childhood education and needed to focus on getting this sorted.

“Handing in my notice at work was the hardest thing I’ve had to do, because I loved my job. But there was no way I could work with the under-twos any more.”

She had a crutch to help her walk. “Heaps of physiotherapy” at the hospital helped keep her moving, but other symptoms were harder to nail down . . . fatigue and “brain fog”, sitting down and waking up four hours later, and the feeling of being alone “because people don’t understand what chronic pain can do to a person”.

Holly says it’s hard on Richy, too, having a mother who is tired or unwell so much of the time.

One significant development was the delivery of a range of disability aids. Everyday tasks that had become difficult could now be done more easily, in a different way.

As well as the health effects of her condition, Holly has had to deal with the financial implications of not being able to work.

Initially she had been on ACC, but that stopped when her condition was found to be neurological. Health insurance kept her afloat for two years, and she sold a section she had owned. Now she and Richy live in rented accommodation, on sole-parent income support, with disability and accommodation allowances. It’s a struggle.

“I’ve started doing SPELD training, because I need money and something to do,” Holly said.

SPELD teachers work with children and adults with specific learning disabilities, such as dyslexia.

“Richy has been diagnosed with dyslexia; I have my degree in teaching; and I really wanted to work with kids. It’s a less physical role — I’ll be able to sit one on one with children with specific learning disabilities. I have one more assignment and a couple more tasks to do. I should be finished by the end of October.”

At the moment, Holly’s condition is “pretty much stable” — a common feature of MS is that it comes and goes with varying, sometimes increasing, severity — but she wants to know what she is up against.

“Doctors say, ‘At least we don’t have a diagnosis.’ I want a diagnosis so I can plan ahead. And when a new symptom does crop up, it scares the hell out of me. I wonder what’s going to be next.

“I enjoy singing, playing the piano, painting furniture (and animal skulls) . . . I want to keep doing that.”

In the meantime, she follows the regimen of medication and supplements aimed at keeping a lid on the symptoms of her “invisible opponent”, she has lunch once a week at the Tatapouri Sports Fishing Club with her father, Wayne Davis, and helps her mother Ann and sister Serena with their breakfast and free-range-egg stall at the Farmers’ Market.

“At the market it’s nice to see friends and parents from my old workplace, and see how far the children have come on,” she said.

“It’s one of my favourite things.”

Multiple sclerosis (MS) is considered an autoimmune disease in which the body’s immune system attacks its own tissues. In MS, this immune system malfunction destroys myelin, the fatty substance that coats and protects nerve fibres in the brain and spinal cord. While a cure has not been found, treatment typically focuses on speeding recovery from attacks, slowing the progression of the disease, and managing symptoms. Some people have such mild symptoms that no treatment is necessary.

In general, three typical patterns of MS can be recognised:

- Relapsing-remitting: relapses with a flare-up of old symptoms or the development of new symptoms over several days or weeks, followed by a remission.

- Secondary-progressive: after an initial course of relapsing-remitting MS, a slowly progressive disability develops over many years. Relapses may still occur.

- Primary-progressive: in about 10 percent of cases, symptoms worsen slowly and progressively from the beginning, without distinct attacks.