Recovering from Multiple Sclerosis

Real-Life Stories of Hope and Inspiration

By George Jelinek, Karen Law

Allen & Unwin

Copyright © 2013 George Jelinek and Karen Law
All rights reserved.
ISBN: 978-1-74331-381-7

Contents

About the authors,
Foreword,
Acknowledgments,
Introduction,
1. Call of the korimako Wendy Wood,
2. The healer Jack McNulty,
3. Ride on fearlessly Keryn Taylor,
4. Where hope began Craig Wheeler,
5. Conversion of a true sceptic Ginny Billson,
6. Proving them wrong Carrie Philliskirk,
7. A hard-fought battle for knowledge Rebecca Hoover,
8. All about love Gaspar Hoyos,
9. Finding authenticity Megan Swan,
10. A model of health Phil Hassell,
11. Harnessing a rebellious streak Sam Gartland,
12. A breath of hope Linda Bloom,

CHAPTER 1

1. CALL OF THE KORIMAKO

WENDY WOOD

Sitting on her timber balcony looking out over the magnificent Matakitaki River, Wendy Wood turned to her husband Steve in late 2009 and brought up the one subject that had been secretly haunting them both. Had the time come to leave their beloved guest lodge on New Zealand’s South Island? Was multiple sclerosis about to take away their dream?

In fact MS had threatened to take away that dream before it had even begun. More than ten years earlier Wendy and Steve were living and working in Hamilton on the country’s more populated North Island. Both originally from England, they had been attracted to New Zealand by the active, outdoors lifestyle. When Steve’s engineering employer relocated him there for two years they decided to stay for good, making regular fishing, walking and diving holidays part of their new lives. They were very happy in Hamilton, but the lure of the wilderness and beauty of nature kept tugging at their hearts. No longer content to live in the city and holiday in the wild, after a few years they had started making plans for a permanent move into the rugged countryside. They dreamed of opening up a guest lodge, a place where they could spend the next phase of their working lives. They were approaching 40, with no children, and the many years they had both spent working had given them enough spare capital to invest in 100 acres (40 hectares) of land.

During this period the tell-tale signs of MS had already started creeping into their lives. The first mild attack came after a hiking holiday with friends walking the beautiful Kepler Track. Wendy and Steve climbed high onto a mountain ridge, passing between Lakes Te Anau and Manapouri before descending the rough path on the other side. As always they carried all their food, clothes and camping gear on their backs, enjoying the strenuous exercise and the challenge of the walk. A few days after returning home to Hamilton, Wendy noticed that her feet had started to go numb. When the feeling spread up to her knees she consulted her GP about the problem. ‘He was great,’ she remembers. ‘He always took me seriously and never fobbed me off.’ He sent Wendy to an orthopaedic surgeon, suspecting she may have constriction in her spine. However, a CAT scan came back clear and a month or so later the numbness disappeared. ‘My doctor said we’d keep an eye on it but not to worry.’

Then in late 1998 Wendy and Steve set off on another long trek, this time walking the Abel Tasman Track. Again they carried all their gear on their backs, enjoying the four-day hike along the rugged coastal paths. As they walked they talked about their future, the plans and dreams they had for the parcel of land they had bought in the Matakitaki valley. They thought up designs for lodges, discussed ideas for sustainable living, native tree planting and eco-friendly guest rooms. ‘It was always in our minds that we were going to build a lodge; we had all these great plans and my health didn’t feature in our thoughts at all,’ says Wendy. But on the final day of the walk their planning and dreaming was brutally interrupted.

‘Towards the end of the hike I started to get severe pain in the backs of my knees,’ Wendy remembers. ‘It got so bad that I couldn’t carry my pack anymore and poor old Steve had to carry mine as well.’ They completed the trek with Wendy hobbling her way painfully over the final kilometres, and Steve soldiering on with his own pack on his back and Wendy’s pack strapped to his chest. By the time they emerged from the track Wendy was having difficulty straightening her legs.

At the emergency department of the local hospital, the doctor thought cysts might be causing the problem. At that stage Wendy didn’t connect the two leg incidents, but when she returned home her feet started getting numb again and she went back to her own GP. This time he sent her to a neurologist, fearing Wendy had a tumour on her spine. After a fairly lengthy MRI she went back for her results on Christmas Eve. Steve went with her for support; they were both very worried about the prospect of cancer.

The neurologist looked up at Wendy from his chair in the consulting room and said, ‘I’m very sorry to tell you that it’s not cancer, it’s MS.’ Had it been a tumour, he explained, he would have been able to operate and fix the problem.

Wendy and Steve were speechless. They were relieved that it was not cancer, but really didn’t know what to make of the shock diagnosis. Wendy had very little knowledge of MS, and until then she’d had no reason to investigate the disease. ‘I knew it wasn’t nice, but I knew it wasn’t something that was going to kill me straight away,’ she says. The neurologist referred Wendy to the local hospital for intravenous steroids, which were helpful as the numbness subsequently subsided. As he was not fully convinced it was MS, he also recommended getting a second opinion and referred Wendy to a leading MS specialist in Auckland.

‘This second neurologist confirmed that I had MS, but he also told me it was quite likely that I had benign MS and might have no more difficulty than just occasional patches of numbness,’ Wendy recalls. ‘We talked about the disease and he told me there was no need to take drugs at this stage, but that steroids would help if there were any more episodes — and interestingly, he also recommended a “heart smart” diet.’ He also quizzed Wendy on her medical history, looking for clues about past illnesses and infections that may have triggered the disease. Wendy remembered that a couple of years earlier Steve had contracted chickenpox and had been quite unwell for a time. After nursing him at home, Wendy had later developed shingles in a line across the small of her back. It was not the worst case of shingles, but bad enough to be uncomfortable. The neurologist certainly considered this significant, particularly as the MS lesions that had shown up on her MRI exactly mirrored the line of shingles on her back.

With a mild diagnosis of MS confirmed and discussed with her GP, Wendy went back to her former life, blissfully unaware of what the disease would have in store for her. She and Steve decided to put their plans to build a guest house on hold for a year, to see whether Wendy’s health was going to be reliable. They carried on with their busy lives in Hamilton, staying in their jobs at one of New Zealand’s biggest dairy companies, where Steve was a control engineer and Wendy was a business analyst. They continued hiking, though they chose to go on slightly shorter walks where they didn’t need to carry quite as much equipment. And there were no more problems with Wendy’s legs. Partway through the year they enjoyed a diving holiday, and again it was incident free. After twelve months, and firmly believing the benign prognosis, they decided to take the plunge and build their dream lodge. ‘My health was really back to normal and I felt perfectly fine,’ says Wendy. ‘Steve and I sat down and had a real heart-to-heart about whether we should carry on with our plans. As I had been well for the whole year we decided to go for it.’

Their 100 acres at the top of South Island was steep, overlooking a beautiful river valley. Wendy and Steve identified a house site and set about planting around 4000 native shrubs and trees to attract birds and other wildlife. They did this themselves, taking time out from their busy working lives to clear, dig, plant and water the ground. The surroundings were breathtaking, and whenever they spent time in the Murchison area to tend their land they were reminded of why this move was so important to them. It was peaceful, nurturing, beautiful — part of the stunning wilderness that had convinced them to move permanently to New Zealand in the first place.

Throughout 2000 and 2001, their dream slowly began to take shape. The landscape was starting to flourish as the plants grew up around the house site. Wendy and Steve commissioned a local architect to turn their ideas into reality and create a haven for themselves and their future guests. The final lodge design was a timber construction over three levels that included three guest rooms, all with balconies overlooking the river valley. Upstairs, a communal north-facing deck joined the common lounge room. Three internal flights of stairs were needed to link Steve and Wendy’s living quarters with the guest areas: it was a house designed for the environment, not for disability. And why shouldn’t it be? Throughout this whole period of planting, designing and finally building their dream lodge, Wendy’s health remained perfectly stable.

By mid 2001, the lodge was almost ready to open for business. The garden was establishing, the building was finished: all it needed was a name. One morning Wendy and Steve were in their kitchen in Hamilton, listening to their favourite radio program while getting ready for work. ‘Just before the news each day they used to play a different bird call,’ Wendy remembers. ‘That day it was the korimako, the New Zealand bellbird. When they announced the name, Steve and I just looked at each other and knew that was what we were going to call the lodge,’ she says.

The olive-green korimako, with its beautiful bell-like call, was just one of the many bird species that were becoming abundant around the lodge, attracted to the native garden Wendy and Steve had planted. The kea and kaka, both types of mountain parrot, were becoming frequent visitors too, as was the New Zealand falcon.

In 2001, Korimako opened for business for the first time. Wendy and Steve took guests all summer, watching their dream come to life after so many years of planning. Wendy loved the new lifestyle, the chance to plant her own vegetable garden and use the produce in the meals she cooked. And she loved sharing this wonderful bit of wilderness with the many visitors who arrived from all over the world. It sat easily with her friendly, open nature and passion for the environment.

For three years Wendy and Steve ran the lodge during the summer months, returning to Hamilton for contract work each winter. They continued with all their other outdoor activities too, skiing during the snow season, diving, fishing and hiking in the warmer months. Throughout this whole time there was not one single recurrence of the numbness or painful symptoms that had prompted Wendy’s diagnosis in 1998. ‘I knew that I had MS because I had been told that I did, but I didn’t have any manifestations of the disease, apart from slight numbness in my fingers and toes,’ she says. ‘I didn’t feel ill and I could do everything I wanted to do. I was thinking this idea that I had benign MS was probably right.’

In 2004 Wendy and Steve left Hamilton altogether and moved permanently into the lodge. They still only took guests in summer, but used the land all year round, grazing dairy cows on the spare acreage. They also acquired two gorgeous black labradors: Oscar — the lodge’s official guest welcome officer — and Shadow.

Everything continued to run smoothly. By 2005 Wendy had been living with MS for around seven years, and in all that time had only had two fairly minor relapses. Then, imperceptibly at first, there began a very slow but steady slide into disability. This was something Wendy was totally unprepared for. Without any warning the disease had become progressive, and her physical and mental functions started to suffer. ‘To begin with, things just felt a bit odd down my right side. It was hard to put my finger on anything specific, but I started to feel slightly unbalanced,’ she remembers. ‘Then a few months later I started to trip over. My balance was obviously getting worse and I developed foot-drop in my right foot.’

With these new and troubling symptoms to contend with, Wendy went to the local doctor’s clinic for advice and was referred to the nearest neurologist. ‘He just looked at me and said, “Well, you’ve got MS — what would you like me to do about it?”, which was astonishing.’

So Wendy went back to the lodge with its three flights of stairs, its steep rocky paths and its vegetable garden built into the hillside. But as the months went by everything became harder and harder to manage. ‘I began to get incredibly tired and I also started to have disturbed vision,’ she recalls. ‘Then I started wobbling, and once it started it just gradually got worse over time.’ This wobbling came with a feeling that Wendy was literally walking on ice and needed to be careful where she put her feet.

Then the bladder control problems started. Wendy found she was constantly needing to locate toilets to avoid accidents whenever she went out. She managed the problem well, but it was affecting her quality of life. ‘It was such a horrible symptom, like being a little girl again and needing reminders to go to the toilet all the time before leaving the house,’ she recalls.

Her speech, memory and concentration also started to suffer. ‘I found myself stumbling over my words and slurring my speech. That was very disturbing because it felt like I wouldn’t even be able to hold a conversation anymore,’ she says.

Weakness and clumsiness in her fingers meant she no longer enjoyed sewing, which had been a pleasurable hobby, and soon the vegetable garden became off-limits as well.

Other people, including guests at the lodge, were starting to notice Wendy’s physical and cognitive problems. She managed to hide the full extent of her disability, but it was always Steve who carried platters of food from the kitchen, who poured wine, who served the meals. ‘I had to tell guests that I had MS because they would see me tottering around and wonder what was wrong with me. I just dropped it into the conversation, but I always felt guilty burdening strangers with my problems.’

By 2009 Wendy was struggling to plan and cook a whole meal by herself, as the time spent standing up in the kitchen was causing terrible back pain. Her vision was often blurry and fatigue was a constant problem. ‘I’m incredibly independent so I wouldn’t let it stop me, but it was certainly very tough,’ she admits.

By now she was stumbling a couple of times a day and falling flat on her face about once a week. ‘If there was something there for me to trip over I would go completely flying and land on the floor. Luckily I never got badly hurt — except for my dignity,’ she recalls.

‘We were still running the lodge and I just had to carry on as best I could, but in the end we started to talk about selling up and moving somewhere flat that would be more suitable for me,’ she admits. ‘We kept putting off the decision because Korimako was our dream and we had been really happy there,’ she says. But as Wendy’s symptoms continued to worsen, the decision to leave seemed inevitable. ‘I think Steve was finding me difficult to live with because I was getting angry at our situation.’

Known for being calm, logical and dependable, Wendy felt those traits were disappearing as she slid further into disability. ‘The calmness was going because I was frightened, the logic was going because I was finding it difficult to reason, and I really wasn’t dependable anymore because I wasn’t sure I could follow through on anything,’ she says.

In her sun-lit timber kitchen early one morning, Wendy was leaning against the workbench, gathering the strength she needed to prepare breakfast for the guests. The dawn chorus had been spectacular that day, and through the open window she could see the mountain ranges in the distance and hear the rush of the river over rocks where the trout would be hiding. Inside, the familiar sound of the radio interrupted Wendy’s thoughts. She’d missed the morning bird call that day but the news had just finished and the presenter was announcing a guest — a medical professor from Australia who would be talking about MS.

Wendy’s ears pricked up. She sat down on one of the big kitchen chairs to listen. ‘When I heard Professor Jelinek talking that day, it was the first time I’d been exposed to the thought that there was anything any of us could do about MS,’ she says. Over the next few days Wendy replayed the interview several times on her computer, letting the evidence-based recommendations about a low saturated-fat diet, vitamin D, exercise and meditation sink in.

‘From the start I found the evidence very convincing. I went to see my local GP and I told her about what I had heard and that I was considering changing my diet,’ Wendy says. ‘She was very interested and it turned out she was a vegan herself, so had no concerns about the diet.’ Her GP had also, as part of her medical training in Australia, been exposed to Ian Gawler’s work on mind–body medicine. ‘She loved the concept of empowering patients to take control of their own health,’ Wendy says.

(Continues…)Excerpted from Recovering from Multiple Sclerosis by George Jelinek, Karen Law. Copyright © 2013 George Jelinek and Karen Law. Excerpted by permission of Allen & Unwin.
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