Recovering From Multiple Sclerosis E-Book

George Jelinek MD

• Herausgeber: Allen & Unwin
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 333

Veröffentlichungsjahr: 2017

Beschreibung

A diagnosis of multiple sclerosis conjures up images of wheelchairs, paralysis and a shortened life, but in fact it's possible to regain mobility and make a recovery. This is a collection of twelve life stories of people from around the world who have been diagnosed with MS, and been able to halt the progression of the disease and recover mobility by following a program of drug treatment, diet, sunshine, meditation and exercise. These stories offer hope and inspiration to others diagnosed with MS, and an insight into the different journeys people take to recovery. Based on extended interviews, they also offer an understanding of the challenges faced by people with different types of MS and at different stages in the progression of the disease

Leseprobe

Real-life stories of hope and inspiration

GEORGE JELINEK AND KAREN LAW

Published in 2013

Copyright © George Jelinek and Karen Law 2013

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without prior permission in writing from the publisher. The Australian Copyright Act 1968 (the Act) allows a maximum of one chapter or 10 per cent of this book, whichever is the greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given a remuneration notice to Copyright Agency Limited (CAL) under the Act.

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Trade paperback ISBN 978 1 74331 381 7

E-book ISBN 978 1 92557 610 8

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ABOUT THE AUTHORS

Professor George Jelinek is an emergency physician in Melbourne, Australia, with professorial appointments at the University of Melbourne and Monash University. He was the first Professor of Emergency Medicine in Australasia when appointed at the University of Western Australia in 1996, and is one of Australia’s leading and most decorated emergency physicians, in 2003 being awarded the College Medal of the Australasian College for Emergency Medicine, its highest individual honour. George founded the international journal Emergency MedicineAustralasia in 1989 and has edited it continuously since then, currently as Emeritus Editor. He has also written several major textbooks in emergency medicine.

In 1999, George was diagnosed with multiple sclerosis (MS), a disease his mother had died from 18 years earlier. He quickly researched the medical literature and realised that it was possible for him to stay well with intensive lifestyle change, which he adopted within weeks of diagnosis. Within months he had written his first book, Taking Control of Multiple Sclerosis, updated in 2010 as Overcoming Multiple Sclerosis: An evidence-basedguide to recovery. In 2002 he began a series of live-in retreats for people with MS, leading these in Victoria, Western Australia, the Australian Capital Territory and New Zealand over subsequent years, with a retreat program in the United Kingdom starting in 2013. He started a website, Taking Control of MultipleSclerosis, in 2008, revamping it as Overcoming Multiple Sclerosis in 2010. The website now has an active community of several thousand members. Overcoming Multiple Sclerosis UK was launched as a charitable trust in the United Kingdom in 2012, appointing its first Chief Executive Officer in the same year. In recognition of his work in multiple sclerosis and emergency medicine, George was a Western Australian Finalist for the 2008 Australian of the Year.

After a difficult year in 1999 with continuing disease activity, George stabilised his condition in 2000 and has remained well since, with no further relapses and no deterioration. Over a thousand people with MS have now experienced George’s retreats and adopted his recommended lifestyle, along with the many thousands who have read his books, and hundreds of thousands who have visited the website. Many of these people have kept in touch with George over the years, including his co-author Karen Law. From the many who have reported recovery, George has chosen a dozen people for this book, with the aim of bringing hope to people everywhere that it really is possible to recover after a diagnosis of MS.

Karen Law is a writer, musician, teacher and mother of three, living in Queensland, Australia. She grew up in a village in rural England, and proceeded to a career in journalism, writing for an English newspaper. She and her husband migrated to Australia in 1995, travelling around the country for two years while Karen became serious about music, recording a CD and performing at folk music festivals. Later, after settling down and having children, she moved into freelance feature writing for magazines, specialising in parenting and the tourism trade. She has written scripts for ABC radio and released two CDs of her own songs, one for adults and one for children.

In 2003 Karen first developed symptoms of MS, which persisted and worsened until a formal diagnosis in 2010. Karen met George Jelinek soon afterwards. At the time she was in the middle of a spate of frightening relapses and was badly in need of hope. She found it. She also found the strength and courage to make major changes to her life, confront areas of emotional ‘dis-ease’, and get better. She sees her life very differently now, and her recovery as the result of a continuing process of self-exploration, discovery, and regaining balance. Karen strongly identifies with the spiritual aspects of healing, and acknowledges their importance in her own journey. Apart from her family, music has once again become the major passion in her life; she runs two music groups, teaches private students, and performs regularly. She has been free of MS relapses for over two years.

Helping to write this book is a symbol of the transformation that healing can bring; the realisation of a dream that would not have been possible before diagnosis. The twelve survivors profiled in this book, with their honest and courageous stories, have each also contributed to Karen’s own recovery in a special way. Every time she listened to one of their real-life accounts, a little bit of inspiration and healing rubbed off on her—in the way that both she and George hope it also will for their readers.

FOR

Sandra, Sean, Michael, Pia, Ruby and Johnny

AND

David, Murray, Hazel and Roanna

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

Recovery

FOREWORD

This is a book filled with the wisdom and experience of survivors. They are a source of information and inspiration from which we can all learn. My wife was diagnosed with multiple sclerosis over fifty years ago and is still sharing her love with me and showing how wrong doctors can be when predicting the future. We all have the potential to heal and outlive expectations if we are willing to participate in our life and health. We can learn from survivors and imitate them and let them and this book be our life coaches. When you heal and love your life and take responsibility, your body benefits.

George Jelinek and Karen Law have learned the same lessons I have learned from cancer patients. Self-induced healing is what we are all capable of. So read on; let the introduction, stories and concluding chapter be your guide and prepare you for life so you don’t have to learn from a disaster, but let the experience of others help you to live up to your potential.

Bernie Siegel, MD

Author of A Book of Miracles and Faith, Hope & Healing

ACKNOWLEDGMENTS

We would like to thank Wendy, Jack, Keryn, Craig, Ginny, Carrie, Rebecca, Gaspar, Megan, Phil, Sam and Linda for their willingness to participate, their openness, their courage, and their honesty. We also thank our partners and family for their wonderful support and encouragement.

INTRODUCTION

Is it really possible to recover from multiple sclerosis? Open any textbook and the prognosis for people with MS is made all too stark. MS is an incurable neurological disease that is progressively disabling; the only thing that varies between people is the rate at which one becomes disabled. It is almost impossible to find the words ‘multiple sclerosis’ and ‘recovery’ in the same sentence in the medical literature or in a neurologist’s office.

Yet the literature is remarkably consistent in documenting that genetic background influences only around a quarter of the risk of developing MS, and none of the risk of disease progression once diagnosed; the great majority of the risk is attributed to our environment, and most of these environmental influences are under our control. Saturated fat intake, omega-3 fatty acid consumption, sunlight exposure and vitamin D supplementation, cigarette smoking, response to stress, exercise, and many other modifiable risk factors have been shown in a variety of different scientific studies to influence the risk of developing MS as well as its progression. But the possibility of changing these risk factors is rarely mentioned to people with MS when they are diagnosed or when they attend their doctors for ongoing management. And the possibility of actual recovery is never mentioned. The best hope that is offered is delaying the inevitable.

For most people with MS, delaying the inevitable progression to disability is not good enough. Rather than accepting this prognosis, many of us with MS have chosen to make major changes to our lives, leaving no stone unturned in our quest to recover our health. We have chosen to do whatever it takes to stay or get well. The exact formula for doing that may vary between people, depending on their interpretation of the science behind these risk factors, but also on their understanding of themselves—not just their physical bodies, but their emotional and spiritual lives, and what ‘dis-ease’ or imbalance, if any, they may perceive as contributing to the illness.

We are fortunate to have had contact with many, many of these people from all over the world. In the age of the internet and social media, people actively trying to find ways of regaining their health after a diagnosis of serious illness tend to gravitate together. In general, these people are extremely positive, they have found hope, and they have faith that they can change their situations. They are careful about the language they use; they don’t call themselves MS sufferers. We notice that unlike the major MS support and research organisations, they don’t talk about cure, but rather healing.

A cure for MS seems to be a key focus of many of these MS organisations. But the notion of ‘cure’ implies the involvement of some external party working for years or decades to come up with something like a medication or procedure that can be applied to a passive patient, magically curing the patient’s illness. Many research organisations are spending millions of dollars looking at molecules that target particular parts of the disease pathways in MS, or particular modes of therapy such as stem cells, which might be taken or injected or applied in some way to reverse the disease process. It is almost as if these organisations see MS as some kind of external invader, like a bacterium or virus that needs to exterminated.

But what of the more traditional notion of healing, where an individual understands MS as a fundamental internal imbalance, finds hope that getting better is possible, takes some control over the illness, makes internal and external changes—and, despite the prevailing paradigm of progressive disability, stays well, or even gets better and recovers function that had been lost? This is a vastly different experience for the person, even though the outcome of cure and healing may seem the same.

The experience is transformative. People change fundamentally; many find themselves on a journey more profound than merely regaining physical health. Many may confront difficult issues in their lives, seeing them as somehow being connected with the ‘dis-ease’ of having a serious incurable illness. Many start to wonder about the bigger questions we all face, involving the meaning of our lives, why we are here, and the impermanence of life. Some find that in the process of seeking to heal the illness, they begin to heal many other aspects of their emotional and spiritual lives, and their experience of life improves dramatically. Some even come to be thankful for a diagnosis that prompted them to follow this path.

Could this improvement represent recovery from the illness?‘Recovery’ seems to be a significant omission from the lexicon of MS. Even with various types of serious cancer that very few people survive, such as pancreatic or bone cancer, recovery is still a possibility. There are unexpected survivors documented from most serious cancers, even when the cancer has spread significantly and would not normally be associated with survival. Indeed, at five years after the treatment of most common cancers, people would generally consider they had recovered. There are unexpected survivors of most serious illnesses, despite the worst of prognoses.

So why should recovery never be discussed in MS? We know people with MS who have gone decades without a relapse and with no discernible deterioration; in fact they are better than they were. Should they still feel that they could be struck down with paralysis, or worse, at any moment? How debilitating is it to have this constant possibility hanging over one’s head? Surely we need to start talking about recovery as one of the genuinely possible outcomes from this illness.

While it is important to tell people about what risk factors they can change to stay or get well, and explain the science behind these recommendations so that people can have genuine hope that these changes can work (see www.overcomingms.org), we feel that it is equally important to present real-life stories of people who have made major changes and stayed well, or improved their situation. People who have actually recovered. This allows us to not only get a sense of what is possible, but to see and feel the texture of what recovery really looks and feels like. So that it is possible to see what it really takes, that not everyone does it the same way, that those who recover are not perfect or somehow extraordinary or different, that there are many roads to genuine health after a diagnosis of MS.

These are real-life stories of recovering from MS. We have chosen twelve people from among the many we know around the world who have recovered from MS—people of both genders and various ages, with varying levels of disability when they began this journey, and with different types of MS which they have had for different lengths of time. These are people who have chosen not to hide their illness or their outcomes after often difficult and challenging paths to recovery. We have interviewed them and written narratives that we hope reflect their unique paths through the illness and their lives.

Their stories are sometimes hard, sometimes ordinary, sometimes painful, but always hopeful and always inspirational.

We hope their stories make the possibility of recovery more accessible, and break down the expectation of progressive deterioration after a diagnosis of MS.

A long, healthy and happy life is possible after a diagnosis of MS, and is within the reach of many people.

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.

With a supportive GP and a growing belief that lifestyle change could help her recover from MS, Wendy set about altering her diet to fit in with Professor Jelinek’s recommendations. Up to this point she had always believed she had eaten well. The vegetable garden at Korimako was flourishing with an abundance of garlic, tomatoes, broad beans, zucchini, rhubarb and potatoes. Free-range eggs came from the local farm and top-quality meat—wild and organic where possible—was reared on their land or sourced from the town butcher. Delicious chocolates and desserts were also part of the lodge’s fine-dining experience, as well as platters of rich cheeses to complement an interesting wine list. While this constituted great cuisine, much of it did not comply with the Jelinek diet for MS and had to go. Wendy increased her vegetable intake, reduced meat considerably and removed dairy products from her diet altogether. She also decided to start supplementing with vitamin D, assisted by her supportive GP, quickly raising her levels above 150 nmol/L as suggested.

Just one month later she experienced a dramatic improvement in her MS symptoms. ‘After just four weeks I found that my fatigue disappeared, and then my back pain went away as well,’ she says with relief. ‘These two things made such an enormous difference to my life; suddenly I was able to function properly again because I didn’t have this overwhelming tiredness anymore. And I was able to stand up without being in pain.’

Her almost instant improvement was a huge incentive for Wendy to stick to the diet and keep her vitamin D levels up, which she did for the next two years. ‘It really made me believe that there was something in this. I had nothing to lose and everything to gain; if this was going to help then I thought maybe we could stay living in our little piece of paradise for a bit longer.’

Wendy started keeping a diary of her MS symptoms, keen to chart the improvements as they occurred. She didn’t have too long to wait. By February 2011, just one year after changing her diet, she listed a whole page of improvements in addition to the welcome disappearance of fatigue and pain. Firstly her balance was much better and she realised she had not fallen flat on her face for several months. She was sleeping more comfortably too, and had far greater energy levels during the day. Walking still required concentration, and foot-drop remained a problem, but now she could walk for a whole kilometre (over half a mile), slowly, with only a couple of rests. Her bladder function had improved, with slightly less urgency than before; sensation was returning to her hands and feet, which had been numb for years. Her memory and concentration were also sharper and she was able to enjoy reading again. ‘Before that I used to start a book and then forget what had happened in the story when I picked it up again,’ she recalls.

There were also some unexpected bonuses that had nothing to do with MS. Wendy noted with delight that her weight, which had risen to 72 kg (160 lb) in 2010 after three years of increasing disability, had now stabilised at 60 kg (132 lb)—the same weight she had been on her wedding day 25 years earlier. The terrible itchiness she had always felt in her skin had also vanished. ‘I put that down to removing dairy from my diet, so that was an added incentive to stay off it,’ she says. And for some reason her hair returned to the curls and ringlets of her teenage years, and her skin glowed.

One year later the improvements were still clocking up. By now her fingers and hands had lost their clumsiness, and for the first time in years Wendy was able to use pins, needles and scissors without dropping them. She could even thread a needle. Mentally her cognitive skills were improving too, and she could reason out a dressmaking pattern and complete sewing projects quickly and successfully. ‘That was so great, especially as I had lost weight and needed to alter clothes to suit the new, slimmer me,’ she laughs.

Her balance continued to improve, and for the first time she was able to stand on one leg while getting dressed. Yoga was helping her physical mobility and flexibility and she even progressed to shoulder-stands.

After years of letting Steve do all the serving at the lodge, Wendy found she could carry plates of food again without fearing she would drop or spill them. She was also enjoying the challenge of preparing complex meals for guests, cooking them and even clearing up afterwards.

Other people noticed the changes too. Wendy’s physiotherapist, who had known her for years, commented, ‘You’re not slurring your speech anymore.’ Wendy started to feel socially confident again and far more optimistic about the future.

For a while, however, Wendy and Steve’s lives at Korimako Lodge still seemed to be hanging in the balance. Since their first tentative discussion about finding a more suitable place to live, they had put the conversation on hold, waiting to see what changes the new lifestyle might bring. They were certainly very hopeful, and Wendy was markedly better both physically and mentally—but something stopped them from celebrating just yet and declaring a victory over MS.

In the end it took a residential MS retreat to really cement the belief that overcoming the condition was possible and allow Wendy to feel confident about the future. The retreat also reintroduced Wendy to meditation, and tightened her adherence to the whole diet and lifestyle package. ‘I had been sticking to the diet 95 per cent for those first two years, but sometimes I would cheat,’ Wendy says. ‘Not because I couldn’t resist certain foods but because I wanted to be polite in social situations.’ After the retreat, she resolved never to knowingly eat saturated fat again, and she upped her daily intake of flaxseed oil. ‘I left feeling completely empowered in my own health and not embarrassed over my diet any longer. I also started pursuing lots of different exercise options,’ she says.

On her return, Wendy also booked in to see her supportive GP, keen to share her latest health insights. ‘She was really pleased to see how much I had improved, and she even encouraged me to meditate,’ says Wendy gratefully. ‘When I got back from the retreat she gave me meditation lessons in the surgery. She’d book a double appointment for me and we’d sit cross-legged on her consulting-room floor and she’d talk me through a guided meditation,’ Wendy says. ‘Then we’d swap roles and I would talk her through one.’

As well as bringing a more mindful approach into daily life, the retreat also put Wendy in touch with her emotions in quite a profound way. Over the fourteen years she had been living with MS, through her initial diagnosis, early mild disease course and later disability, Wendy had never really allowed herself to grieve. She had felt anger, particularly when the disease became progressive and threatened her lifestyle, but she had never cried. ‘On the last morning of the retreat I woke up in my room, which I shared with two other ladies, and I was sitting on my bed thinking about my life,’ she remembers. ‘Suddenly I just burst into tears—it was just bubbling up from inside me. I wasn’t really distressed, but finally all this emotion was coming out,’ she says.