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Inspired by the daily blog of Walk over Wales at age 64 I travelled across the world for the learning support and friendships of a walking course I achieved more than I ever thought I could Now others can similarly gain from this inspirational and informative book Lorraine Baguley Australia Invaluable Stacey s book will inform inspire and encourage future McArdle generations David Thompson UK My walking course in Wales provided an opportunity to increase my knowledge challenge myself and experience first hand the bond people with McArdle Disease share One Step at a Time provides similar insights for patients friends and family Rachel Walker USA Walk over Wales One Step at a Time Walking with McArdle Disease Stacey L Reason One Step at a Time Walking with McArdle Disease With each step your heart beats faster your legs grow heavier and realisation sets in you have to stop For those of you with McArdle Disease and for those that have walked alongside it this ritual is all too familiar One Step at a Time traces the route thoughts and emotions of a McArdle patient on a lifealtering journey of discovery and growth Her understanding irrevocably evolves when she walks over two hundred miles to meet it Today walking with others has become a regular event McArdle groups are getting together around the world to walk share and learn from one another in a supportive and safe environment One Step at a Time provides a truly awakening narrative for patients families and health professionals alike Stacey L Reason One Step at a Time I learned to accept what is and embrace what can be in just 210 miles Walking courses UK 12 00 AGSD UK www agsd org uk Foreword by Dr Ros Quinlivan Afterword by Dr Mark Tarnopolsky

One Step at a Time Walking with McArdle Disease

One Step at a Time Walking with McArdle Disease Stacey L Reason Foreword by Dr Ros Quinlivan MBBS MD Afterword by Dr Mark Tarnopolsky MD PhD FRCP C Association for Glycogen Storage Disease UK

I d like to thank My parents Bob and Barbara for without your love support and defective PYGM genes this book would not have been possible Jorge Lauren and Brayley for walking by my side without question for over two decades Andrew your dream captured my imagination one step at a time First published November 2013 Edition 1 1 January 2104 Edition 2 September 2016 Association for Glycogen Storage Disease UK Ltd Old Hambledon Racecourse Sheardley Lane Droxford SO32 3QY UK ISBN 978 0 9569658 3 7 Association for Glycogen Storage Disease UK Ltd 2013 2016 All rights reserved No part of this publication may be reproduced stored in a retrieval system or transmitted in any form or by any means electrical mechanical or otherwise without first seeking the permission of the copyright owners Contributing authors Many thanks to Dan Chambers Charlton Thear Andrew Wakelin and Andy Williams for permission to reproduce the daily blog They all contributed each day or even wrote the whole blog on some days Thanks also to all those who posted comments on the blog pages we have only been able to use a very small selection Photographs Front cover Stacey Reason and Andrew Wakelin on the ascent of Glyder Fach Snowdonia 2011 Photograph by Dan Chambers Supported by the EC DG Sanco through the EUROMAC project contract no 2012 12 14 Frontispiece Stacey Reason and Andrew Wakelin set out on Cadair Idris day 12 of the Walk over Wales 2010 Photograph by Dan Chambers Opposite Andrew Wakelin and Stacey Reason head for a summit Snowdonia 2011 Photograph by Dan Chambers Muscle biopsy photographs are reproduced by kind permission of Professor Caroline Sewry Great Ormond Street Hospital London Our thanks to everyone who pooled photographs from Walk over Wales and the walking courses in particular special mention goes to Dan Chambers Sally Wakelin Jos van den Einde Stacey Reason Andrew Wakelin Allan Muir and Clive Hicks Jenkins Acknowledgements The Walk over Wales team members wish to express their sincere thanks to the support drivers who made the whole enterprise feasible Heather Curry Peter Wakelin Sally Wakelin and Rob Gray A big thank you to all those too numerous to mention individually who sponsored the walkers giving them huge encouragment and raising approx 14 000 to underwrite the AGSD UK s work on McArdle Disease Thanks to Stephanie von Dressler for the Walk over Wales turtle logo Thanks also to Ryan Christensen Kathryn Birch Barbara Derrick Allan and Jamie Muir Finally to Wholebake Ltd for sponsoring some of the walking courses with 9 bars Euromac is the registry for people with McArdle Disease and other rare muscle conditions www euromacregistry eu

Contents Dedication to Jessica Binder 6 Foreword Dr Ros Quinlivan 7 Introduction 8 McArdle Disease 11 Walk over Wales Map of the route The walkers The Walk Days 1 to 32 Press coverage Epilogue to Walk over Wales 13 14 15 20 91 92 Moving forward Walking courses 93 95 Afterword Dr Mark Tarnopolsky 96

Dedication This book is dedicated to all those who struggle daily with McArdle Disease and particularly to the memory of Jessica Binder who died from complications of an episode of rhabdomyolysis pumping again the delay causing her brain to Jessica Binder died aged 31 only months after swell and a few days later her death finally being diagnosed with McArdle Disease Jessica was working on a double major in Jessica s story holds a mirror to the story of photography from the University of Wisconsinalmost all of us with McArdle s except in the Eau Claire and also taking classes to be an way that it ended tragically alcohol and drug treatment counsellor She was As a child Jessica was traumatised when an artist loved to read and she was an avid forced to do exercises she couldn t manage in journal writer since her gym class and each Spring school years She loved to when they had to run a mile swim especially in the It was a huge blow to her self ocean and would often go esteem to be treated as to the local fitness centre someone who was lazy with her snorkel gear Jessica and her family For Jessica s funeral her were very frustrated by the closest friends and family difficulties of getting a compiled a list of words that diagnosis and the many best described her years of trying She started motherly brave getting more fixed radiant compassionate contractures in high school joyful good humoured In the last few years she had curious mischievous many episodes and in the magical free spirited year before her death was Jessica Laura E Binder charismatic daring a twice admitted to hospital 29 July 1979 19 October 2010 deep thinker inquisitive with rhabdomyolysis imaginative adventurous Finally in early 2010 the a lover of learning an avid journal writer name was put to what had ailed her since infancy At last everything made sense regarding possessing a lust for life Pat again She was a beautiful human her physical limitations Jessica had always been being When viewing her picture you would prescribed muscle relaxants for pain relief but never guess that she suffered so much with her learned that they may have contributed to the McArdle Disease It truly is a disease that muscle wasting and rhabdomyolysis doctors don t know about Jessica s mother Pat says We were just I wish I had in my hands before her final beginning to learn about McArdle s and we really episode the guidance which the AGSD UK has didn t yet have a grip on the difference between aerobic and anaerobic exercise and how to avoid produced since Patients and doctors need this information Also schools need help to spot this injury Only six months after being diagnosed disease often misunderstood and hard to live Jessica suffered another massive episode This time it was to take her life It started with hour life with it The education of patients doctors and sports trainers about the disease will be of intense exercise on a stationary bike severe hugely helpful to the McArdle s community contractures all over rhabdomyolysis leading to We are comforted by the fact that Jessica complete kidney failure with anuria waiting too saved another person s life through organ long to seek medical help Creatine Kinase donation contributed tissue samples to McArdle s exceeding 200 000 being put onto dialysis her research and provided the inspiration for lungs filling with fluid going into cardiac arrest guidance on emergencies now being available it taking 45 minutes for her heart to start 6 One Step at a Time

one step at a time Foreword McArdle Disease is often not diagnosed until well into adulthood Individuals struggle for decades not understanding why they suffer from exercise intolerance fatigue muscle pain and fixed contractions Alongside the physical symptoms feelings of embarrassment and inferiority ensue Living with a rare and chronic condition can lead to anxiety and depression particularly if the cause remains undiagnosed With diagnosis comes awareness and information on proper strategies for managing the condition on a daily basis yet for many the experience remains a solitary one This group grasped the challenge of proving to themselves and to the world that despite the disease they could achieve remarkable things The author narrates her personal experience of learning to live with McArdle Disease over a 210 mile walking trek down the length of Wales What began as a personal journey soon flourishes into a significant event catching the imagination of people with McArdle Disease all around the world Over the course of 32 days this intrepid group steadily puts one foot in front of the other Coming to the realisation that this is the way forward they agreed to start annual Walking with McArdle s residential courses to help others with the condition Walking with the group for a day gave me as a medical professional involved with the care of people with McArdle Disease a rare opportunity to gain a valuable insight into how people live with this rare condition Sharing practical strategies for managing day to day is vital towards improving quality of life The lessons that were learnt throughout this journey are discussed and shared Dr Ros Quinlivan MBBS MD Consultant in Neuromuscular Disease MRC Centre for Neuromuscular Diseases National Hospital for Neurology and Neurosurgery London Foreword 7

one step at a time Introduction How did we get here and why is it important From early childhood you know there is something wrong You try but cannot keep up with your friends They so effortlessly run and play but your body fails you your legs stiffen in protest making it nearly impossible to take another step Every day with everything you do you fall behind everyone With no explanation at hand you are left feeling embarrassed humiliated utterly defeated Doctors examine you but find nothing wrong Perhaps you are suffering from growing pains perhaps you aren t trying hard enough or perhaps you are just simply unfit So you try harder Despite your best efforts the pattern of trying and failing repeats itself time and again As you move into your adult years you have become adept at Stacey and Dan third and fourth from left and Andrew right meet at the AGSD US conference Denver 2009 managing your premature exertional fatigue stiffening leg muscles and accelerated heart rate Readymade excuses for stopping resting have become deeply ingrained into your subconscious daily routine Your life is different For most the journey of discovery is long and frustrating Diagnosis is bittersweet Simultaneously relief and panic wash over you What does the future hold living with a rare genetic disease McArdle Disease is a rare metabolic disorder more specifically a glycogen storage disease Type V caused by a deficiency in the enzyme myophosphorylase The missing enzyme prevents glycogen stored in the muscle to be converted to glucose for exercising muscles Symptoms include exercise intolerance with myalgia early fatigue weakness of exercising muscles and myoglobinuria potentially leading to 8 One Step at a Time

rhabdomyolysis renal failure and or compartment syndrome This is a story that begins in the Fall of 2009 when a handful of anxious McArdle patients stepped into an empty conference room in Denver Colorado They had taken a bold first step to discover more about the disease that has insidiously taken away so much from them On behalf of the AGSD UK Association for Glycogen Storage Disease UK Andrew Wakelin Type V Co ordinator McArdle patient greeted the newcomers with a lifetime of experience For many it was the first time they had ever met anyone else diagnosed with McArdle Disease Over the course of two days Andrew led the inquisitive group through various formal and informal discussions all centred on McArdle Disease In the months following the conference the group maintained contact with one another forever connected For the first time in their lives someone fully understood their daily efforts What Andrew Dan and I didn t realise was that in less than a year we would find ourselves standing on a carboniferous headland known as the Great Orme about to embark on a journey of a lifetime On July 2nd 2010 Andrew Wakelin Dan Chambers and I set off one step at a time We were headed to Cardiff 338 km away Walking the length of Wales was a life long goal for Andrew oddly enough the idea intrigued Dan and me as well Our trio soon to become a foursome joined by Andy Williams wanted to demonstrate to the world that despite our physical limitations this lofty goal was attainable As we made our way across endless fields deep valleys and foreboding mountains the hours accumulated both in our hiking boots and perched in A happy group set off on day 16 of Walk over Wales half way through Introduction 9

front of our computers Our team was dedicated equally to our goal of reaching Cardiff and to that of bringing McArdle Disease to the attention of teachers youth leaders and the medical community alike After thirty two days 210 miles 338 km and 35 000ft of ascent our intrepid group walked soulfully into Cardiff The high level group day 6 of the walking course North Wales 2013 L to R Andrew Siobhan Niekie David Jen and Dan Bay It may have been the end of Walk over Wales WoW but it is where now begins With all that we learned about McArdle Disease and ourselves I felt compelled to share this story Living undiagnosed or diagnosed with a rare disease can often leave an indelible impression This book sets out to not only trace my personal journey of Dr Ros Quinlivan right joins Andrew and Stacey for a day on the second Walking with McArdle s course Wales 2011 living with McArdle s but more importantly to provide the reader with hope inspiration and practical advice for managing life day to day Of course I continue to struggle with the idiosyncrasies of McArdle Disease But now when you see me on the side of the road taking a break be rest assured I am no longer desperately searching for a makeshift explanation but rather making the most of what life has to offer and pausing to enjoy the moment Stacey L Reason Toronto Canada November 2013 10 One Step at a Time

One step at a Time McArdle Disease What causes the disease and how it affects those who suffer from it McArdle s is a very rare disorder of muscle metabolism About 200 people in the UK are diagnosed but we believe it affects about 1 in 100 000 people so there are probably around 600 affected people in the UK in total Genetic condition McArdle s is inherited from parents who are carriers and is not infectious There is no cure but much can be achieved with good management Energy shortage People with McArdle s experience a serious shortage of energy during the first 10 minutes of any activity and throughout all intensive activity Care has to be taken as even activities like chewing drying after a shower and hanging up clothes can cause muscle symptoms Normal muscle showing muscle glycogen phosphorylase enzyme Symptoms and risks McArdle s people appear normal and healthy but activity results in premature fatigue exaggerated heart rate pain and muscle spasm If activity is continued despite the pain muscles become stiff and swollen and muscle Muscle of a person with McArdle Disease showing breakdown rhabdomyolysis may occur In severe absence of the enzyme cases this can lead to life threatening kidney failure or compartment syndrome requiring urgent surgical intervention Longer term risks Longer term the risks are of accumulated muscle damage from repeated over exertion or alternatively of muscle wastage due to the avoidance of activity If activity is avoided due to the symptoms this can lead to loss of aerobic fitness which makes it much harder to do anything without quite severe symptoms It can also result in a wasting away of the muscles Adapting activity To cope with necessary daily activities people with McArdle s have to break down any intense activity into very short sections of a few seconds Some activities are avoided and McArdle Disease 11

others carried out differently McArdle s people also need to take plenty of gentle exercise to enhance their aerobic capacity They should plan for at least 45 minutes of exercise five times per week The best way is to build activity into your life The technical bit McArdle s is also known as Glycogen Storage Disease Type V It is inherited in an autosomal recessive fashion Mutations on the PYGM gene on chromosome 11 result in the absence from the muscle cells of an enzyme called myophosphorylase This enzyme made up of 842 amino acids is needed to convert glycogen fuel stored in the muscle into energy at the start of activity and throughout intense activity 101 Tips for living with McArdle s AT the P r Six Sec ese Sec on rv on d W oir d R in u d sim le a ply nd ex you pla r ine d E MoR n THA A handy book for people with McArdle s 101 Tips for a good life with McArdle Disease An easy to absorb guide to the many things which can be done to avoid problems and improve fitness This pocket sized paperback of 164 pages can be ordered or can be accessed on line free via the AGSD UK web site Also available in German and French from the respective patient support groups Andrew Wakelin With a foreword by Dr Ros Quinlivan Medical Overview McArdle Disease medical overview A 20 page booklet providing a quick overview of the medical aspects of the condition It is intended for any medical professionals who are not familiar with McArdle s In particular it will assist geneal practitioners emergency doctors and consultants in other conditions when they are seeing someone with McArdle s Information to support primary care decisions for people living with this very rare metabolic myopathy One page overview 1 Introduction What is McArdle Disease McArdle s specialised service Genetic confirmation Inheritance Concomitant conditions Rhabdomyolysis Cramps and contractures Pain medication Medical emergencies Lab results Creatine Kinase Urate Liver enzymes Exercise and diet Problems with activity Beneficial exercise Physiotherapy Diet Alerts Statin therapy Drug side e ects General anaesthetic Tourniquets Examinations 2 3 4 4 5 6 6 7 8 9 9 10 11 12 13 Scientific and medical research 14 14 15 15 15 Support Information Cards 16 Further reading publications 16 17 Support group Back cover For those who want to know more the AGSD UK publishes the McArdle Disease Handbook by Kathryn Birch Ph D This 208 page A4 paperback book is a guide to the scientific and medical research into McArdle Disease explained in plain English As well as printed copies to order the handbook is available for free access on line The handbook is also available in German and Italian and hopefully further languages in future from the respective patient support groups of those countries Association for Glycogen Storage Disease UK McArdle Disease Reference for GPs 3 McArdle pages www agsd org uk Please check out the GSD Type V McArdle Disease section of the AGSD UK web site for more information on McArdle s New developments in the walking courses and any revisions or extensions to the Guidance for Walking section will be published there 12 One Step at a Time

One Step at a Time Walk over Wales A group of people with McArdle Disease walked 210 miles 338 km across Wales to raise awareness of the condition Walkers Dan Stacey Andy and Andrew later joined by Charlton Our Walk over Wales turtle logo I m not one to keep a daily journal but for the next 32 days of Walk over Wales WoW I did Not sure of what I was getting myself into I thought it would be shrewd to chronicle the days events Up until this point in time my solo athletic experience s had been the yardstick against which I measured myself that was about to change Doing anything even walking a few blocks with anyone even my family was always a source of great angst I wonder will a month long stroll up and down the hills of Wales help me lessen my lingering disquietude Throughout our journey the team posted a daily blog The intent was to share our story and raise awareness of McArdle Disease We highlighted the details of each day documented how the collective group was managing and shared tips and strategies we discovered along the way As you read on you ll find my thought s perhaps yours as well contrasted against the the daily blog Walk over Wales 13

The Route Accommodation Day start finish Photograph on blog 14 One Step at a Time Map data Google 2013 The route of Walk over Wales led from Great Orme on the north coast to Cardiff Bay on the south coast It travelled through the Snowdonia National Park the Cambrian Mountains and the Brecon Beacons National Park 210 miles 338 km taking in many mountains on the way with approx 35 000 ft 10 700 m of ascent

the waLkers Stacey Reason Canada The challenging walk to piano lessons all three blocks on the flat was the first memory Stacey had of being different She would often be forced to stop part way in response to her racing heart and stiffening leg muscles At the age of eight she had already developed a wide array of excuses to explain her seemingly poor level of fitness At the time her favourite excuse was stopping to tie her shoelace The physical challenges and utter embarrassment continued into her adult years Medical doctors insisted she was merely out of shape Desperately wanting to increase her fitness Stacey kept busy She ran she rowed she cycled and played ice hockey Of course always at a slower than slow pace Fortunately she figured out the magic that she now knows as second wind and never ran into too much trouble In 2005 while out for a run Stacey was struck by a car and sustained a severe head injury All physical activity had to stop For two years she was not able to exercise and became very de conditioned While visiting her It turns out that Stacey has a strong will It was cousin a few years after the accident Stacey clear that a chronic muscle condition was not decided to go for a swim As she made her way going to prevent her from remaining physically fit and capable of doing the physical across the pool all of her muscles cramped up activities that most of us only passively watch Embarrassed she slowly made her way back to on TV and dream about the edge and didn t tell anyone what had A few years earlier when I was on call I was asked to see Stacey in the emergency room happened there was no apparent explanation her plasma creatine kinase CK levels The following day she was hospitalised found to because were extremely high She had been swimming have sky high CK and subsequently underwent and she had developed excruciating pain along the muscles of her back and of her thighs She tests and was diagnosed with McArdle Disease told me that her family background was from Relieved to know she wasn t lazy Stacey England I had read that Dr Brian McArdle in searched for information about McArdle s Guy s Hospital London had described in 1951 a muscle disorder in a man that had pain after eventually finding her way on line to Andrew Wakelin Happy to learn how best to manage day physical activity This is a genetic disorder that can be seen in families Given her background to day she eagerly began exercising again this I thought that this was her diagnosis time more carefully and more slowly Today Stacey has not allowed this condition to slow her down Instead this has Since then Stacey has continued to work been a stimulus to prove that the mind and hard to regain her pre accident level of fitness body can overpower such a disorder Along the way there have been challenges Stacey never gives up I believe that she will be a role model for many with similar including a few hospitalisations for conditions to encourage them to go upstream rhabdomyolysis myoglobinuria and near renal and conquer the world failure but overall Stacey continues to improve Dr Arturo Wadgymar MD Nephrologist Finding the right balance has been the most challenging aspect Whilst participating in the Walk over Wales was both terrifying and exhilarating it was an experience that dramatically changed how she lives with McArdle s day to day Stacey looks forward to seeing you on the hills of Wales Walk over Wales 15

The walkers Dan Chambers USA At age 4 Dan remembers lagging behind the rest of his soccer teammates At 6 he recalls walking up hill to his best friend s house and having to stop and sit on the curb as his muscles felt heavy and stiff Middle school PE became a nightmare as fatigue increased He began to bow out of activities often standing on the sidelines watching his classmates run Despite his struggles he stayed active and baseball became his sport While adapting to the sport with muscles on his mind in every play running became increasingly strenuous as the bases lengthened to 90 ft 27 m His baseball career came to an abrupt end when he knocked a line drive to the fence As he rounded first base at full speed everything slowed down and despite pushing to the max he appeared as if he was running in slow motion He kept pushing until his sliding attempt into 3rd base turned into a stumble and fall Hunched over crippled with contractures in his legs arms and abdomen he realised the gravity of his condition These early years were filled with confusion His desire to play and his work ethic were in stark contrast to his endurance Simple activities that looked so easy for others were extremely difficult for him His mom began taking Dan to local doctors looking for reasons for his exercise intolerance There were numerous misdiagnoses including labels of lazy and deconditioned It took out of state visits to McArdle specialists Dr Ronald Haller in Dallas Texas and Dr Alfred Slonim in NYC to confirm the diagnosis of McArdle Disease and learn the basics of managing this lifelong disorder and how important it is to listen to his body and not push past fatigue and pain even in activities of daily living Though it was extremely helpful to meet with McArdle specialists once back home in California he was left alone to figure out how to manoeuvre through life He gradually pulled out of all formal sports and activities Still attempting to be active he suffered two major injuries ages 16 and 17 while out with friends resulting in hospitalisations with CK levels in the 200 000 s His mom continued to search for help and guidance which led her to an online support group where she began speaking with Andrew Wakelin In 2009 she took Dan to an AGSD conference in Denver CO where he was able to meet others with McArdle s including Andrew and Stacey After that meeting Andrew finalized his plans for Walk over Wales and invited Dan to join Walk over Wales proved to be a turning point in his understanding of how to not only live with McArdle s but to thrive This life changing experience was instrumental in the realization of his abilities and turned his focus away from what he couldn t do to what he could do Dan has since returned to help others to experience Walking in Wales and has participated in additional more challenging walks with Andrew in Snowdonia In 2013 Dan Andrew and two other young men with McArdle s hiked in the Dolomite mountains which proved to be the most challenging and exhilarating walk yet Ironically having McArdle s has allowed Dan to travel to places he would most likely have never got to and challenge himself safely with others who understand while enjoying spectacular scenery He looks forward to continuing his adventurous walks and sharing his experiences with other McArdle ites 16 One Step at a Time

The walkers Andrew Wakelin Wales Andrew remembers symptoms of McArdle s from age four He was always the one out of his siblings who wanted a piggyback and now almost 60 years later he still shivers at the thought of leaving his childhood home and having to walk 100 yards uphill immediately from the front gate Doctors repeatedly put his bad legs down to growing pains rheumatism or knock knees or were just totally indifferent to the problem He had two major episodes of rhabdomyolysis one after a tug of war and one after helping to hold up a car whilst a wheel was changed Despite massive fixed contractures both instances were treated as sprains and he was sent home with pain killers He was lucky not to go into renal failure If only a simple CK blood test had been carried out he might have got onto the path towards diagnosis Andrew had kept active with aerobic exercise from his early years and later worked out for himself to avoid anaerobic exercise He thinks doing a daily newspaper delivery round as a teenager probably did him the world of good perfect exercise for someone with McArdle s at a time when his muscles were still developing He also managed family walks and Scout hikes but had a miserable time in sports and gym lessons at school Andrew had gout diagnosed at age 19 with no obvious cause which might have led to discovering his McArdle s but it was not followed up by his then GP Then in 1980 at age 30 a social contact with a doctor who listened carefully to his life story and did a CK test led to him being referred to a neurologist a battery of tests two muscle biopsies and a diagnosis At last He was told he was about the 50th case in the world and there was nothing to be done Goodbye Having finally got a diagnosis of a real medical condition explaining his lifelong symptoms Andrew no longer went out for walks thinking this was what he had to do to protect himself After about three years he realised he had deteriorated and what little advice he had been given could not be right Over 18 months he gradually built back up to the point where he could again walk the hills albeit at his own pace and in his own way He struggled and wanted to give up at the start of each walk but from experience he knew that later he would be fine and at the end of the day he would be ready for more while his normal friends would be fit to drop At age 50 Andrew discovered the UK McArdle Clinic and finally learned the scientific basis for what he had been able to achieve His diagnosis was confirmed by DNA testing he has two copies of the common R50X mutation and thus has zero myophosphorylase With the greater understanding which came from learning the mechanisms of the disease and learning about second wind he went on to make better use of what he had learnt by experiment Using techniques he has developed he has climbed all 188 of the Welsh mountains over 2 000 ft 610 m and mountains around the world He copped out 200 ft 61 m short of the 19 340 ft 5 895 m summit of Mount Kilimanjaro blaming altitude sickness rather than his McArdle s When leading the Walk over Wales at age 61 Andrew believed that his McArdle s was no worse than it ever had been Walk over Wales 17

The walkers Andy Williams Singapore For as long as he can remember Andy has lived with muscle pain weakness that has sporadically led to a feeling of humiliation and inadequacy with that humiliation sometimes painfully public Several times he had been told he was simply lazy or unfit and despite three major instances of rhabdomyolysis he was not diagnosed until the age of 43 His parents often told him how even at an early age he hated walking and after a short distance would complain his legs ached At school he remembers swimming to have been a particular challenge His first recollection of humiliation was a junior school lengths competition He managed to complete the length but not before those on lifeguard duty came to the side of the pool to pay particular attention to the poor weakling who seemed in peril and who was delaying proceedings with what must have been one of the slowest lengths in school history Cricket was his favourite sport and he was good enough to represent both his school and university A reflex catch at short leg takes little exertion Running between the wickets can with skill be controlled by appropriate calling except of course in very tight situations In one such as a junior player he recalls attempting a third run and coming to a grinding inexplicable halt mid pitch Dismissed run out he walked back to the pavilion close to tears unable to explain what had happened or why Andy credits cricket with helping him to cope with the disease and to remain reasonably active but it has seen him hospitalised twice with rhabdomyolysis On both occasions kidney tests were undertaken but never a simple creatine kinase CK test The days that followed games would also see him wander around with a degree of stiffness most people would associate with far more demanding exercise His worst rhabdomyolysis episode followed an introductory gym session in 1986 which led to three days in hospital and all sorts of tests including a kidney biopsy but again no CK test and no diagnosis Andy finally got the answer to that school run out thirty years later when diagnosed in Singapore through a series of coincidences and a very alert cardiologist With diagnosis came relief and also the opportunity to learn how to cope and indeed improve fitness Since visiting Dr Alfred Slonim in New York in 2005 Andy has tried to plan regular exercise into a hectic business travel schedule Having kept a record of treadmill sessions he has been able to show considerable improvement Andy found the Walk over Wales to be a tremendous experience in meeting other McArdle people for the first time and in gaining an enormous sense of achievement Having hated hills all his life the revelation of conquering several mountains and even enjoying the challenge encouraged him to strive for further improvement in fitness and to return to enjoy the beauty of Wales and its mountains Approaching 50 Andy has just bought himself a new cricket bat He plans to recommence playing and hopes to enjoy some competitive cricket in the same team as his 12 year old son George before George moves on to a level at which Andy could no longer hope to hold his own 18 One Step at a Time

The walkers Charlton Thear Canary Islands Unusually for a McArdle person Charlton known as Charlie was diagnosed at the age of six Although living in the Canary Islands at the time his family are from Newcastle on Tyne in the UK where his parents Alison and Terry managed to secure his diagnosis at the Centre for Life From the age of seven Charlie has attended the UK McArdle Clinic where his diagnosis was genetically confirmed Having learnt what to do and not to do he has successfully avoided any major incidents or hospitalisations Charlie has known Andrew for many years and when he heard about his plans for Walk over Wales he was very keen to take part despite being only 13 at the time School term got in the way but he managed to walk with the team joined by his mum Alison for the last three days to the finish in Cardiff At the time of going to press Charlie is now 16 and has ticked off three major Welsh peaks including the highest Snowdon He has also completed a major challenge of 7 days of serious hiking in the Dolomites Italian Alps More walkers around the world Other people with McArdle Disease joined in the spirit of the month by completing a walk wherever they were as the were not able to join us in person They all helped to raise awareness and raise money through sponsorship to help the cause They were Dianne Berryman in Australia Lorraine Baguley in Australia Marcelo De Luca in Argentina Margaret Carter in the UK Margaret deserves special mention as she is one of the worst affected by McArdle s following a life of hard physical work and a very late diagnosis She had been a regular user of a Margaret Carter supporter extraordinaire mobility scooter and a wheelchair for 10 years prior to her walk for McArdle s in 2010 Walking with her walking frame Margaret pressed on against the odds to walk some 100 yards Sensibly her route was to her local pub and back Margaret even got herself featured in the local paper and raised an amazing 500 Our thanks to all these walkers whose support was really appreciated and helped to keep us going in Wales Walk over Wales 19

0 Following two days of transit the moment of truth had finally arrived the first day of our collective journey across Wales was 20 upon us What were we doing embarking upon such a lofty goal complete madness 40 As our kind hearted support driver manoeuvred through the 2 July narrow roads my anxiety began to swell Engaging in physical 60 Great Orme s activity with others is not something one with McArdle s does I Head to had to keep reminding myself that they too would find themselves Conwy Castle 80 needing to rest just as I would but yet that nagging sensation of complete panic overwhelmed any and all streams of logical thought I had I was 100 beginning to feel like the eight year old version of myself who would mentally prepare for the dreaded end of year play day an event most kids eagerly anticipated 120 all year long Instead I fearfully prayed for a natural disaster To add to my sense of fear we had arranged to meet the press for our 140 monumental send off Fortunately they didn t arrive and we were able to slip away unnoticed The sky was a vacant blue the air was warm and the smell of the sea was 160 carried in land by the strong off shore winds Sounds lovely not exactly as our first step of many was met by a tremendous headwind This made the transition into 180 second wind more difficult This invisible force was the first of many unexpected challenges that lay ahead for us 200 Without hesitation Andrew unapologetically stated his need to stop What a 210 relief as I did too but yet felt embarrassed to say it out loud As nonsensical as it may seem uttering aloud the need to rest felt like an admission of failure of incompetence something I didn t want to concede to After a few minutes we carried on repeating this pattern as often as needed It was at this moment I began to realize this journey was different perhaps even manageable if only one step at a time The impact of having to stop and rest due to McArdle s can be all encompassing Everyday without fail I find myself in a situation whereby I need to stop or at the very least slow down and rest Having lived thirty six years without a diagnosis I was perpetually embarrassed with the ambiguity of my seemingly poor level of fitness This led me to the creation of an expansive collection of creative excuses for rest my favourite was letting my dog stop and sniff during our daily walk Naturally seeing dogs on this first day I anxiously hoped they would stop for a visit for an inconspicuous rest before carrying on No chance these Welsh pups are not attuned to the ways of this McArdle walker As we turned the bend the winds were behind us and the rest of the day s walk transpired without incident We talked we laughed we ate all pretty normal stuff All that was left was two hundred and five miles and a few mountains And with that thought a fleeting sense of accomplishment soon vanished in a puff of reality Breathe me the optimistic pessimist just had Stacey and Heather approach the bridge to Conwy Castle and to remember to breathe Day 1 the end of day one 20 One Step at a Time

DaiLy BLog post Only 205 more miles to go She eld to all McArdle s and the wind Why everyone should have a cuddly dog Ice cream at Conwy Castle 5 miles down Heather drove us to Great Orme only to find the road closed A few minutes of panic when we thought we d miss the press but no worries Heather got us there in due time for our meeting with the press that didn t show Mother Nature greeted us with gale force winds but we managed a photo opportunity nonetheless Check out our WoW Banner In typical friendly Welsh style Andrew instructed us to be sure to greet all passers by what he didn t tell us was what the local greeting was So when he At Great Orme the wind made our banner a handful greeted a walker by saying Sheffield we thought that is what we were to do sociable as her own dog We discussed the We ve since learned that is just a city in the north benefits of having a cute and cuddly creature of England it slipped out as he explained where One they get you out and walking every day and DNA testing for McArdle s is carried out two frequent stops either to visit with other Back to the issue of the wind All three of us walkers or for a pee break help with the found it quite challenging to begin our walk transition into second wind directly into a head wind It meant we had to go The walk along the estuary was very scenic extra slowly in order to safely get into second and peaceful Across the way we had a wonderful wind no pun intended view of Conwy and the Carneddau Mountains After we left Great Orme we travelled along a where we ll be going over the next two days lane that gradually descended around the We arrived at Conwy Castle after a 5 mile headland walk and had an ice cream to celebrate knowing The sun was shining and the cloud shadows we only have 205 more miles to go were dancing across the sea We made our way to the seashore and walked along the North Wales Way to go congrats to all of you on Day 1 Coast Path We stopped in at a cafe to refuel with Stacey I had an ice cream from Murphy s in Bara Brith Welsh Cake Bread your honor Along our way we were met by many dogs Mike Marino USA and Stacey was disappointed that they were not as Walking on hard sand to ease the effort WoW one day done Walk over Wales 21

0 The butterflies in my stomach now seemed more like caged elephants The beauty of Conwy Castle faded quickly as we set off 20 one step at a time It was difficult to take in all of the lush scenery as my old familiar preoccupations returned anxiety fear and panic 40 How many curious and beautiful things I have missed as a result 3 July of being consumed with my body s inborn error of metabolism and 60 Conwy Castle all that it affects My increased heart rate my stiffening muscles and left behind my deflated ego Today was no different I could feel myself at last 80 heading down this familiar path fighting to ignore the obvious What I failed to realize for the second day running is that I was now walking with 100 people who fully understood this predicament At the same time we all began to slow down it was clear and noticeable and in a 120 few moments we came to an eventual stop No words were said we just stopped Together we rested and enjoyed the moment And then just like that we carried on 140 A moment of relief washed over me maybe it was finally sinking in I no longer had to worry or feel embarrassed Who am I kidding These primitive responses were 160 not going to fade away that quickly They have lodged themselves deep in the crevices of my mind Logic would not 180 prevail at least not today But a seed of hope had been 200 planted a new beginning 210 was emerging After lunch came the realization that there were more hills to conquer and further miles to walk Andrew did classify today as a moderate stretch I m not sure I agree He may be a sadist or an optimist I still can t tell but if eight miles is moderate surely twelve kilometers would be hellish at least to me And with the elevation peaking at three hundred and sixty meters it ll feel like we walked to London We agreed to keep our lunch Andrew Dan and Stacey keen to get going from Conwy breaks short so as not to risk falling out of second wind something none of us wanted to do Getting back into a comfortable stride after each break took effort so we carried forward slow and steady As the day progressed and the miles behind us accumulated the walking became easier Is this what normal feels like It is truly remarkable how our bodies adjusted Enjoying the euphoric feeling of our ever moving bodies while it lasted we revelled as a group in our second wind both literally and figuratively With the second day coming to a close and over 13 miles 21 km under our belt we were well on our way Perhaps not far on our way but we were moving and in the right direction south to Cardiff and forward towards a better understanding of McArdle s and our ever expanding boundaries Day 2 22 One Step at a Time

DaiLy BLog post Just under 34 000 Blogtitle ft 10 400 m to go How many sheep in Wales Conwy Blogsubtiltle Castle finally behind us 8 miles 13 km climbed 1 181 ft 360 m Slow and steady was the name of the game Away from the coast and looking down on the Conwy valley the task ahead seemed enormous With our first true day of hilly terrain Dan found it best to purposely slow down before approaching the hill in order to conserve energy A great tip for all of us As we marched up and down all of the peaks and valleys we ran into more sheep than either Dan or Stacey had ever seen too many to count It seemed that every corner we rounded we had sight of Conwy Castle despite hours of walking We were happy to finally lose sight of it in the second half of the day Today was graded as moderate but Stacey is sure Andrew made a mistake as she felt it was rather difficult mostly because Southern Ontario is rather flat Tomorrow we are heading into our first big mountain day 8 5 miles and 830m ascent Off to bed for a good night s sleep Dan is sitting on the lounge floor of the B B playing the landlord s guitar McArdle s reminds me daily that it will always be a part of my life Good luck Looking forward to hearing more Rachel Walker USA Wishing I could share the beautiful scenery of my homeland with you I admire all of you Hwyl Fawr Sioned Williams London Descending to rendezvous with Heather we ll have to go back up Dan finds his first King of the Castle spot Walk over Wales 23

0 As I settled in to bed the night before I was feeling tired homesick and completely overwhelmed I confessed to Heather our support 20 driver and my compassionate room mate that I might not walk the next morning In retrospect I think jet lag was getting the better of 40 me Fortunately I slept great and began the day with a traditional 4 July Welsh breakfast My plate was full with bacon sausage fried 60 Through the mushrooms tomatoes eggs and toast Apparently the Welsh Carneddau breakfast is meant to be bracing and filling preparing the consumer Mountains 80 for a day of hard work in the often difficult Welsh climate and terrain Good thing as today s walk is graded hard 100 In traditional British form the team discussed the day s route over a cup of hot 120 tea The weather was indeed foreboding and Andrew was concerned about our 140 planned route over the Carneddau range His apprehension was justified by a call to 160 Mountain Rescue so a low lying route was quickly mapped out between sips and stirs 180 I had been a little nervous about our first big mountain day who am I kidding 200 I was petrified So the decision to walk an 210 alternate route was not upsetting to me at all even considering the poor weather When we arrived at our starting point the weather was dismal It was the kind of day that would keep any sane person indoors The rain Dan and Andrew push hard up hill in heavy rain fell heavy and the wind carried it sideways there was no escaping it Andrew Dan and I looked at Heather hoping she would confirm out thoughts and insist upon returning us to the safety of our B B Heather would have none of it and next thing I knew we were walking away from the shelter of the car and into Mother Nature s cold wet embrace Within minutes we were soaked The defining moment was upon me would my rain gear withstand the harsh weather of North Wales Fortunately it did I was now regretting my earlier rain dance that kept us off the mountain range For most people the wind and rain would move them along at a steady pace even accelerate them with the goal of reaching refuge as quickly as possible For us that option was a luxury We hiked for three hours and only covered a few miles I can t begin to tell you how frustrating it is to be held back by your body Our minds are telling us to pick up the pace to get out of the rain but our muscles are telling a completely different story cooperating just enough to keep moving And so we plodded along one step at a time ensuring not to tip the balance from aerobic to anaerobic As one could imagine those of us with McArdle s tend to be good planners more out of necessity than anything else I suppose we ve all learned early on the importance of thinking ahead and devising strategies to get from one place to the next safely and without undue embarrassment Our predetermined rendezvous with Heather appeared like a welcome mirage we hopped in the car and headed for warmth The remainder of the walk would have to wait Day 3 24 One Step at a Time

DaiLy BLog post Windy Wet orrible Wales WWoW Blogtitle Change of plans Today we tested our rain gear to the max Blogsubtiltle Technique aerobic capacity success Like a good Scout Andrew checked the mountain forecast before we set off this morning It didn t sound promising But to be certain Andrew placed a call into Jed Mountain Rescue contact OVMRO he confirmed the decision So an alternate route was decided upon Our plan was to complete the same distance today in order to meet our target mileage As Heather dropped us off this morning we were all a bit reluctant to get out of the car the rain was driving down hard and the wind was utterly wicked With rain gear on we set out with a plan to meet Heather a few miles along the route just in case of emergencies Our route was along a high valley 1 300ft and we were into a strong headwind 30 mph so by the time we spotted Heather we promptly jumped into the shelter of the car Despite the inclement weather we managed to get a few pictures for the blog without causing any undue harm to our cameras let s not mention Andrew s water logged cellphone A McArdle hazard to crawl under We have found that we are all three very similar in our performance After 3 days of walking together we realise that apart from building aerobic capacity it is essential to have good technique to avoid injury We are all learning from each other and will write more about this later in the trip Although tomorrow is our rest day Andrew insists we have to finish today s route I believe the word perseverance applies here Wishing you clear skies for the rest of the walk or at least a little less rain Jo DiCarlo California Great to see you look like you re having fun You are an inspiration to us all Dianne Berryman Australia Now we know why Wales is so green and beautiful Dan you still look handsome even though you look like a drenched dog Terri Chambers San Diego A very wet WoW crew very happy to see support driver Heather Walk over Wales 25

0 Our thirty two day journey across Wales was constructed with much needed rest days strategically placed every four to five days 20 What we didn t account for was the possibility of having to makeup for lost mileage due to inclement weather a rather remote 40 prospect in Wales I d say A difficult decision had to be made do 5 July we rest knowing we have twenty eight days of walking ahead of us 60 Catching up or do make up the mileage knowing we have one hundred and over to the ninety nine miles to trek in twenty eight days And don t forget Ogwen valley 80 about the hills still ahead One strategy I developed over the years was to try and get ahead of others 100 whenever possible to always be at the front of the pack while out for a walk Then when I needed to rest I could do so while waiting for stragglers to catch up 120 Alternatively I would fall behind and spend the balance of the walk trying to catch up And if that doesn t sound frustrating enough when I d finally get in sight they 140 would set off and the pattern would repeat itself In line with this school of thought we decided to stay ahead of the curve by 160 taking advantage of a rain free forecast and complete the previous day s walk along the reservoir to the beautifully situated bunkhouse Gwern Gof Uchaf our home 180 away from home for the next three nights Andrew our chief navigator soon to be named Illustrious Leader has trekked all 200 over the hills of Wales and knows most of the country like the back of his hand 210 With that knowledge Dan and I happily plodded along while Andrew s exceptional map reading skills kept us on the straight and narrow more or less We are on a path just not the right path declared Andrew Being lost I take pride in always knowing where I am because the last thing I want to be concerned with is being lost and having to retrace my footsteps So one step at a time I like to ensure I m headed in the right direction Having to walk further than required seems counterintuitive when at times you struggle to walk just a few hundred meters Not sure which direction I m headed although it must be Our route along this lakeside then up and over into the Ogwen Valley south to Cardiff across a desolate landscape with rather unimpressive map reading skills Not an ideal position to be in but Andrew really seems to know what he s doing so I blindly follow along Fortunately we were just a stone s throw away from the path The road to our yet to be seen bunkhouse was now in sight Tragedy averted no substantial distances to be retraced Phew The thought entered my mind perhaps I should brush up on my topography and map reading skills Another day done four days finished twenty two and a half miles DONE Day 4 26 One Step at a Time

DaiLy BLog post I think we reBlogtitle on the right path What flies at 300ft and frightens the bejebees out of you Blogsubtiltle Gwern Gof Uchaf basic An experience with varying terrain It has been so wonderful to hear all of your responses to our daily updates on the blog thank you for your support Although today was our designated rest day we had to make up the distance from our rained out day yesterday so we picked up where we left off and hiked alongside the reservoir Along our way we were met by a flock of sheep being herded in to be sheared It was quite the experience as we were directly in their path Fortunately only one was left behind Well matched for McArdle s despite 20 year gaps between us Most of our route was on good trail today however we did encounter slippery rocks bunkhouse Essentially camping but in a and tussocks grassy humps We all agreed that building rather than a tent Directly outside the each time different muscles due to incline and or front door is a flock of sheep keeping watch a terrain were used we had to make the transition little different than stepping over the family dog into second wind with those muscles thereby The next four days will be met with a number slowing us down frequently of great ascents through Snowdonia Part way down the hill our fearless leader BREATHE Lifting a metal gate beware McArdle s Descending over rough ground tomorrow s mountain range in front of us Andrew led us down the garden path the problem was it was the wrong path We received a call from Heather wondering if we were on the right track Although we got slightly off course the end was in sight En route Dan lost his rag second one thus far he is now making the trek rag free The last leg of the day was along the roadside We all heard a rather loud noise approaching from behind and expected a large lorry but no it was a couple of Royal Air Force jets on a training run at 300 ft 100 m Yikes For the next three nights we are staying at a You are all looking wonderful and are an inspiration Lori After the bed and breakfast accommodations your bunk house adventure will be interesting Jo DiCarlo California Today published in the forum of the Spanish Association of people with glycogenosis what you are doing Marcelo de Luca Argentina Walk over Wales 27

0 An easy start in the Ogwen Valley then a gradual climb up over the Glydderau range A short day but with a lot of ascent That is 20 how the description of today s climb read The words that stood out in my mind were easy start gradual climb short day sounds 40 quite manageable 6 July At 0630 my bladder gently nudged me out of a deep sleep I 60 Ogwen to woke with the sudden Pen y Pass over recollection of where I the Glyders 80 was in a converted barn on the top bunk inches away 100 from the biggest cobweb I d ever seen I snuck out the set of double doors as 120 quietly as I could with the intent of sliding back to bed before anyone awoke 140 for another hours sleep Shhhhh The ascent up the Glyder Range was 160 situated right at the foot of our bunkhouse Which meant our muscles 180 would be working hard straight away Anticipating the climb ahead Andrew 200 called today s plan slow and steady 210 According to Sir William the word Glyder derives from the Welsh word Cludair meaning a heap of stones After many hours of push stumble and gasp the name was considered gaelic for endless bloody climb on a hill of marbles Day 5 started in the lee of Tryfan What I didn t account for was the direct relationship between elevation gain and my level of anxiety The higher we climbed the more panic stricken I became But at this point in my newfound relationship with Andrew and Dan I was not about to fully disclose ALL of my weaknesses Andrew drew my attention to the path that would take us to the ridge Holy Mother Day 5 Hard going almost from the start 28 One Step at a Time Crossing a stream in Cwm Tryfan on good stepping stones

Just a couple of steps and rest leaning on our poles on this steep scree slope of God it was a forty five degree angle path that was no wider than 2 ft 0 6 m doesn t this place have codes for nerve wrackingly steep easy to fall and fall and fall paths One step at a time I made my way as quickly as possible up this path to the ridge and more level ground I did not stop I did not rest I did not listen to my aching muscles I just kept going flanked by panic to my right and fear on my left I didn t stop and talk to Andrew I didn t insist that I couldn t carry on I just made my way up and away from a terrifying situation as fast as possible correction as fast as McArdle s possible We were near the top but not at the top We had more climbing to do but the exposed climbing was behind us at least for now The weather had turned for the worse the winds were strong the air was cold and I was certain it was snowing okay maybe they were just really cold rain drops By now I was frozen despite putting on an extra layer As we clambered over the moon scape before us the gravity of the situation began to weigh heavy on my mind Here I was three thousand feet above sea level fighting my way across a rocky terrain with only one choice to carry on At this point I broke down and confessed to Andrew I was in Dan looks back over yesterday s route and north to Conwy over my head The muscles in my Walk over Wales 29

Andrew and Dan brave the Cantilever on Glyder Fach in gusts and rain legs were screaming for rest The heaviness of each step was overwhelming it felt like the weight of the world was resting upon my failing body But the cold rain and limited hours of daylight meant we had to carry on slow and steady all the way We made our way up and over Glyder Fach and Glyder Fawr I was barely able to make my way thus far how would I get back down I kept telling myself over and over again you are healthy you are strong My muscles were yelling at me trying to convince me otherwise I knew they were right but I needed them to hang on just for a little while longer just until I got off this mountain The route down was challenging made worse by my sore fatigued muscles After eight hours of trekking we met Heather at Pen y Pass Relieved and tired we collapsed into the warmth of the car Following dinner I began to feel very unwell cold nauseous and shivering About an hour passed and Andrew made the decision to take me to the hospital All of the appropriate tests were done thanks to a letter I carry from my Dr and my CK came back just slightly elevated in the few thousands My muscles certainly told a different story though After a few litres of IV fluids I was discharged and back in the comfort of my bunkbed What a day exhausted scared and alone and it s just the beginning Just focussing on getting down 30 One Step at a Time

DaiLy BLog post Not all theBlogtitle Glyders is gold One giant step for mankind one small step for McArdle s Blogsubtiltle Forecast rain and high winds with a sprinkle of fear Conquering the cantilever It looked a looooong way down to Pen y Pass Today we set out from basecamp onto the Glyder Range past Tryfan Stacey was clinging onto the ground for dear life We were met with a particularly steep slope straight away which meant we had to take particularly small steps in order to avoid anaerobic exercise Upon completing the first leg we headed forward on a relatively easy track towards the omnious 45 degree path up to the mountain range Already the view was quite intimidating I mean spectacular Once we made it up the very narrow path if you can call it that we stopped for lunch where the Isle of Man girls shared their lunch with Dan We had a choice to make carry on with the intended route or bail We carried on ascending to the cantilever Despite rather intense wind gusts Dan and Andrew fearlessly conquered the rock for a photo op courtesy of Stacey We now had to make our way to the highest peak of this range Glyder Fawr a mile away along the ridge Although the incline was minimal the trek was challenging as the path was poorly defined and over a combination of loose scree and boulders Once at the top we promptly searched for the next cairn that would lead us down the mountain too cold for a snap shot At this point Stacey s legs felt quite sore and shaky McArdle s related and untimely enough Cheerful to be getting excellent care the weather started to gust in Despite Stacey s pain we had to get down So we compensated by taking the slow and steady approach in order to avoid the quick scramble and stop A few hours later following supper Stacey felt particularly unwell sore muscles nausea and shivering The decision was made to go to the hospital and have her CK checked The CK came back minimally elevated so the conclusion was that Stacey was dehydrated The lesson we all learned is that not all that ails you is due to McArdle s Thanks to Gwynedd Hospital for their prompt friendly and superlative service Keep moving one step and one day at a time everyone is cheering proud of and behind you and the whole Wales gang Mario New york Congrats guys Stacey that is one picture I do not want to see any more of Hugs John Reed Canada Amazing Truly you are an inspiration and shining examples of what can be achieved in spite of McArdle s Cheryl Ellis England Walk over Wales 31

0 The pain in my legs reminded me of my poor decisions from the previous day I would NOT be walking today For that matter 20 perhaps nor would Andrew or Dan the weather was quite dismal Six months prior to arriving in Wales I sent an enthusiastic 40 email back to Andrew stating that I wanted to join him on his 7 July pilgrimage across Wales Really Had I committed to five weeks 60 Over the trekking up and down the hills of Wales Snowdon I began walking I walked everyday I carried my pack I walked massif 80 up hills I walked down hills I walked with my dog I walked with my friends One step at a time I didn t pass up an opportunity to walk I thought I 100 was ready I was certain I was prepared Andrew sent a very detailed itinerary to the team about a month before 120 departure It included map references mileage elevation gain grade terrain and comments But the substantiveness of the landscape didn t sink in until I found 140 myself lost against the backdrop of the mountains and their magnificent proportions Pre diagnosis I had conquered a few mountains In particular I summited Mt 160 Washington via Tuckerman s Ravine 8 5 miles and 4 300 ft 1 310 m of ascent to the 6 288 ft 1 916 m peak It was challenging I struggled I took my time but I 180 made it up and down without incident But Snowdonia was different The peaks boasted striking rock formations and 200 treeless tundras and terrain that dropped away precipitously on one side or the other 210 sometimes both to the valleys below I was beginning to understand exposed routes with vertical drop offs heightened my angst propelling me forward at a dangerous pace I would have to deal with this and fast as we had 175 miles to go Confirming my previous thoughts McArdle s was not the problem elevation was not the concern Anxiety to sheer drop offs coupled with an inappropriate coping strategy was the stumbling block The pattern looked a bit like this stressor exposed paths led to increased anxiety and tense muscles followed by an urgent need to escape the threat moving faster than my body can supply energy to my already On the Miner s Track with Y Lliwedd in the background stressed muscles Learning how to mitigate these and other variables that can impact McArdle s was an important lesson for us all Andrew and Dan conquered Snowdon while Heather and I conquered the grocery store Their tales were exhilarating their pictures terrifying I am so pleased the weather cooperated more or less and they were able to summit the highest peak in Wales For me the decision to re join the boys will have to wait until the morning Although it was my intent to walk every step of the 210 miles 338 km the need to listen to my body was a priority I kept telling myself the road is long the journey has just begun Day 6 32 One Step at a Time

DaiLy BLog post And then there were two Safety first Revisions revisions revisions Hang on for dear life Who s leading who Don t panic The morning of day 6 approached quite quickly as the previous night was a late one We were greeted with rain and heavy fog not an ideal day to summit Snowdon So we headed off to the cafe down the road to update the blog and check the weather forecast A late start was decided on as the weather was to clear by afternoon Today Snowdon would be met only by Andrew and Dan as Stacey s muscles were quite sore remember safety first At 1 50 they headed up the Miner s Track in foul conditions with the plan to turn around if it got any worse For the first 20 minutes the rain persisted but then settled down so they carried onwards and upwards The trek up was nice but rather windy Andrew asked walkers coming down what the conditions were like at the top all said something different not too helpful So the route would have to be decided moment to moment Andrew and Dan were met with unbelievable wind at the summit 25mph winds gusting up to 50mph The pictures appear as though they are in the midst of a snow storm extremely poor visibility Dan had a moment of panic as he wrestled with his pack this led to an unfortunate strain of his upper arms We can climb mountains but struggle with our packs ohh the subtleties of McArdle s sigh On the way down Dan had to lead Andrew for a short bit as Andrew could not see through his fogged up glasses the blind leading the blind Just when frustration was setting in the skies began to clear and the view was spectacular thank goodness for the late start Once off the mountain we all enjoyed another fabulous meal courtesy of Heather and drank drank drank water that is Thought du Jour Right now I feel as though I don t have McArdle s Dan on the way down Snowdon the highest mountain in Wales With Heather seeing Andrew and Dan off in the rain Gusts to 50 mph and no visibility on the summit That giant challenge on this day Forward gladiators Marcelo Argentina My goodness I can t imagine what it must be like to climb a mountain under these conditions McArdle s or not Jo Di Carlo California Descending into a beautiful evening Down at 9 30 pm Walk over Wales 33

0 Frustrated Sidelined Sore I am beginning to feel like the weakest link Which I know logically isn t true but when are emotions ever 20 logical Heather s intuition kicked in straight away She reminded us that our goal was to get to Cardiff happy and safe Even if that 40 meant adjusting our route from time to time 8 July Heather and I kept busy throughout the day we dropped off the 60 Through the boys today they were tackling the Moelwyn Mountains I wrote the Moelwyn slate previous day s blog we transferred luggage to our next base Tanquarries 80 y Fron in Dolgellau and finished off with picking up 100 Andrew and Dan up at the end of their nine mile trek 120 Keeping busy and feeling productive helped me keep 140 everything in perspective I had come to Wales for the express purpose of 160 walking one step at a time from the Great Orme to Cardiff and now I 180 found myself benched an all too Happy at the prospect of leaving the bunkhouse familiar feeling 200 Prior to my diagnosis I can t count how many times I have passed up an 210 opportunity to do something for fear that I wouldn t be able to keep up I ve avoided team sports and play days golf tournaments and group fitness classes for how else would I explain my tragically poor level of fitness Watching from afar albeit for a different reason brought that familiar feeling to the forefront Perhaps this was part of my journey to not only accept my diagnosis of McArdle Disease but a more global affirmation of self It was at this point I decided to accept the challenge and participate when and how I could That evening we had a long discussion about our expectations for the walk Our collective goal was to make it to Cardiff together Given the numbers of variables we d encountered thus far flexibility was going to be the key to our success And so the decision was made slow and steady all the way to Cardiff Day 7 Making our way through the long abandoned slate workings of Cwmorthin 34 One Step at a Time

DaiLy BLog post Upon reflection Continuing to recover Can you say BULL Slow and steady all the way For two days since climbing the Glyders Stacey has felt quite sore Upon reflection the CK test was premature and had likely not peaked so rest and plenty of fluids is the name of the game It is important to note that the Glyders ascent was met with challenging terrain exposed steep paths and high winds rain None of which is favourable for someone with a fear of heights The sending off crew was out in full force this morning The footpath was surrounded by numerous calves and one VERY large bull note how big he was in the pictures Shortly after starting out Dan was feeling rather fatigued but no pain After a short break and something to eat he felt much better and was ready to go Sometimes it is difficult to distinguish between what is related to McArdle s and what is just par for the course we are certainly learning a lot as we go The ground was quite boggy and made the trek slow going and very wet good thing Dan has perfect footwear On the way up Andrew and Dan were passed by a couple very typical for us a little while later they were passed by the same couple making their way down again quite typical The couple joked that they d had time for a meal and a bottle wine at the top This very clearly demonstrates how we have to manage with McArdle s slow and steady all the way Thought du Jour We realise we may have to adapt in order to work around McArdle s by missing some peaks and revising our route as the main objective is to get to Cardiff Essentially there have been a number of variables along the Stacey sees Andrew and Dan off Yesterday s route over Snowdon lost in the clouds way that have lengthened our days They vary from weather challenging terrain diminished visibility poor paths fear photo ops fatigue and trying to find wi fi to work on the blog Slow and steady all the way to Cardiff Having to adjust revise adapt is just part of having McArdle s it may not be what you planned for or expected but you fi nd another way Terri Chambers San Diego Fantastic photos I m off walking but I don t think my Australian winter will be anywhere near as challenging as your Welsh summer Dianne Berryman Australia through a field with a very large bull Walk over Wales 35

0 Last night I crawled into my double bed pulled a warm duvet up to my chin and slept undisturbed in the privacy of my own room heaven Our B B is situated on the outskirts of Dolgellau against the backdrop of a gentle rolling hillside a stark contrast to the Ogwen 9 July Valley We are staying here for the next week before moving on to Minfordd to Machynlleth For now I will enjoy the beauty that surrounds me as the heart of the the softly falling rain echos peace and tranquility Rhinogs As Andrew and Dan set off one step at a time in a persistent drizzle this morning Heather and I wondered how long they would last The wet Day 20 40 60 80 100 8 120 140 160 180 200 210 Feeling a lot better weather was relentless Even though Dan was revelling in his newfound relationship with the rain it was clear that Andrew was getting a bit weary of it Needless to say they packed it in early in exchange for a warm shower and dry clothes Today was Heather s last day For the past week she drove us out to and back from some of the most remote places I d ever been She fed us cleaned up after us and nurtured us What were we going to do without her Next in line was Peter Andrew s brother Peter would be taking over as support driver on Monday and Andy a fellow McArdlite a couple of days thereafter Four boys and me oh dear I would soon learn that despite spending a week as the sole female Andrew Dan Peter and Andy were quite pleasant for guys A few posed shots for the press 36 One Step at a Time

DaiLy BLog post It s raining again Rain 5 Sunlight 1 Nuclear fallout Soggy boggy footsteps Second wind saves the day once again Dan loves the rain even when starting out in it Sunlight in Wales No such thing Six consecutive days of rain Plunging in occasional ankle deep water across buggy stretches of mud shoes saturated to the max though the Trawsfynydd Power Station provided a radiant warmth for drying After four hard days labeled according to the mileage and elevation estimation on the itinerary day eight presented Dan and Andrew with a less challenging walk Although rain continued to pour down and the terrain was scattered with patches of soggy mud our route The wild ponies were not so wild was reasonably level with the exception of a few moderate ups and downs This allowed for a relative breather while we were still able to continue on in progress towards Cardiff With the avoidance of extensive climbs we are able to maintain a stable second wind traveling with a more consistent pace with fewer stops needed This allowed us to best utilise our aerobic capacity The abundance of inconsistency confusion and simply unknown information surrounding this disorder often clouds the little bit of information that is concrete The importance of second wind and sensitive use of immediate ATP cannot be over estimated Thought du Jour I m really a fair weather walker and five days of walking in the rain is a bit of a shock to the system Andrew Weather s weather Dan By the way that is a joke it s been decommissioned for about 20 years Andrew I thought you were the most sane of individuals But who in their right mind walks the length of Wales in the rain when they own a perfectly good 4WD I will continue to follow you with a large amount of admiration Alan Craig UK Glad to hear Dr Quinlivan walked with you My mam Alison said when I join you there will be four generations of McArdle ites Charlton Thear Canary Islands Crossing the dam of the Trawsfynydd Reservoir Walk over Wales 37

0 Today is a REST day Today we are going to REST For the first time in over a week we are in a position to sleep in laze about and see 20 Wales from a tourists vantage point No hiking boots rain gear backpacks or poles I think I will wear my flip flops 40 Following breakfast we took advantage of some free time and 10 July got caught up with the blog uploading our pictures and 60 communicating with the media The administrative details were Our first real rest day beginning to consume two to three hours each day complicated 80 further by the challenge of finding a consistent internet connection At this point in the walk we had a strong following of ten people most of which 100 were related to Dan and we certainly did not want to disappoint them As Dan was our official photographer he was responsible for sorting through the 120 pictures each day choosing the best ones and composing captions I often wrote the blog with input from Andrew and Dan and Andrew maintained all 140 correspondence with the media Our process was beginning to solidify and our roles were starting to take form 160 I thought I was going to have all sorts of free time in the evenings so I packed a couple of books and loaded a memory stick with eighteen movies So far I hadn t 180 cracked a book or watched a single film Between walking one step at a time cooking cleaning up planning routes blogging and sharing a few laughs there was 200 no downtime The reality of what we were doing was really beginning to sink in 210 Walk over Wales was not just our journey we wanted to share our experience with the world We wanted to record our successes and challenges what worked and what didn t Most of all we wanted to demonstrate that people with McArdle Disease CAN lead a normal healthy productive life Now that we had caught up with our paperwork we decided to visit Barmouth The town is on the west coast of North Wales nestled between a mountain range and the sea on the mouth of the river Mawddach The beach Fishing boat in the harbour at Barmouth extends as far as the eye can see while palm trees sway in the gentle sea breeze Andrew and I meandered through the town grabbed a quick bite to eat then made a quick trip to the grocery store Back at the B B Dan took advantage of the opportunity to unwind and relax On the way back we spotted an ideal dinner venue set on the banks of the Mawddach Estuary George III Hotel I recommend the Grilled Goat Cheese and Ratatouille Tartlet Tomorrow is a special day as Dr Quinlivan will be joining us on the trails Day 9 38 One Step at a Time

DaiLy BLog post Finally a real rest day We re all exhausted from all of this resting Beware of Stinging Nettles Barmouth Abermaw Dan and Stacey outside the George III hotel Penmaenpool with the old toll bridge in the background After 8 busy days the team is enjoying a day of R R Following a lovely breakfast and some administrative house keeping we headed into Abermaw for a leisurely seaside stroll We think we ve spotted a different restaurant to have dinner at tonight Of note Stinging Nettles actually sting Thought du Jour Is there a 3rd wind Dan jokes However we do all feel so much better at the end of a day s walk Well done Keep up the good work Hope weather better for you tomorrow Have some of our heat we ll blow it in your direction Martin and Christine Wakelin UK A day on the beach Summertime in Abermaw Barmouth Walk over Wales 39

0 We had a fair way to drive to get to our starting point for the day We adapted the route for a few reasons To provide me with a 20 comfortable transition day while I found my walking legs Also the weather was variable particularly in the mountains and we wanted 40 to be able to easily converse with Dr Quinlivan 11 July Shortly after we arrived we spotted her car in the distance She 60 Through made the two hour drive on a Sunday to walk with us WoW the Rhinog Following a round of introductions and a few photos we eagerly mountains 80 set off on the trail As per usual the track undulated up and down veering to the left and swaying to the right The path was so waterlogged tadpoles 100 were making it their home We carefully stepped from rock to dry bed being careful not to strain any 120 muscles unnecessarily Our hiking poles facilitated this balancing act allowing us to maneuver through the soggy terrain more comfortably 140 The time passed quickly as the ebb and flow of our conversation had a singular focus McArdle s Dr Quinlivan gracefully addressed all of the questions we posed 160 as if it were the first time she d ever discussed this rare disease We just couldn t get enough one comment led to the next and before we knew it it was time for lunch 180 Perhaps now would be a good time to let Dr Quinlivan enjoy the beautiful landscape of dense forests and open moorland that surrounded us Our apologies 200 Dan spotted a large boulder that looked like an ideal spot for lunch As it turned 210 out this ended up being the turning point marking the half way point for the day We took advantage of Dr Quinlivan s expertise and inquired about my previous day s bout with rhabdomyolsis She felt that my state of panic would have led me to tense up causing my muscles to function more anaerobically resulting in muscle breakdown Something I plan to avoid from this point forward On our return trek back to the cars Dr Quinlivan noticed she was leading the group She abruptly stepped back and urged one of us to take the lead thereby setting a more reasonable pace for us to manage one step at a time Her level of insight both academically and practically is commendable The day concluded at Coed y Brenin Forest Visitor Center over cream Dr Ros Quinlivan visited us for the day and walked with us tea I ve been told the Brit s answer to everything is have a cup of tea you ll feel better They re not too far off the mark It was an absolute pleasure to meet Dr Quinlivan and have the opportunity to share and learn even more about McArdle s Thank you Day 10 40 One Step at a Time

DaiLy BLog post Talkin the walk Dr Ros Quinlivan joins the team for the day s walk Stacey is back in the game Is that sunshine we see Saved by the pole Stacey Dr Ros Quinlivan and Andrew fly the flag Today we were joined by Dr Ros Quinlivan UK s leading consultant in McArdle s It was a very pleasant day we talked the walk The day provided Dr Quinlivan with an opportunity to witness second wind and the need for frequent stops first hand At one point along the trail she recognised that she was leading the group and suggested that one of us lead so as to more appropriately set the pace Throughout the day we shared anecdotes and asked many questions Dr Quinlivan was very gracious and answered ALL of our questions with compassion and care One interesting topic that we discussed was how to successfully transition into second wind We have all experienced times whereby we ve felt as though we haven t been able to get into second wind at all most likely because we have set out too quickly It is essential that we always start out slowly in order to boost our fat metabolism in In Bwlch Drws Ardudwy lieu of not being able to utilise stored glycogen Parts of the path today were terribly boggy so much so we were stepping through puddles of tadpoles In an effort to step around one particular puddle Dan artistically side stepped forwards and backwards around his pole in an attempt to not fall into the soggy grass Dan saved himself at the expense of his pole Thank goodness Andrew has extras Sunshine finally If even for just part of the day We ended the day in true British form by sharing a pot of tea with Dr Quinlivan at the Coed y Brenin Forest Visitor Centre Thank you Dr Quinlivan we thoroughly enjoyed the day Andrew Stacey and Dan represent 3 generations of McArdle ites Awesome Mark Chambers San Diego All using walking poles including Dr Quinlivan Muddy paths but the weather was good Walk over Wales 41

0 Last night Peter joined the team My first impression was this is NOT Heather What will this charming man think when I ask him 20 for a pre walk hug He is a very attractive guy with strong features and a firm voice No I don t think hugging is his thing 40 Given that the team had been together now for nearly two weeks 12 July I had earned a reputation of being rather touchy feely What can I 60 Barmouth and say a big warm embrace is comforting Peter soon learned the drill the foothills of and before I knew it he was the one asking for a hug Cadair Idris 80 Peter and Clive have the sweetest Jack Russell Terrier named Jack We met the three of them this morning high upon the hills overlooking 100 Barmouth Our route began on a narrow road that steadily eased its way down to the railway viaduct below Getting started today would be fairly easy as the demand on 120 our working muscles was relatively low Being a dog owner I ve learned that dogs are opportunists Jack was not unique 140 in this manner He took turns bribing each of us to play fetch with him one step at a time all the way to the sea First Dan then me back to Peter then Clive 160 He worked hard on Andrew but eventually gave up and turned his attention back to the rest of us Jack Peter and Clive too were a pleasant addition to the team if only 180 for the morning When we arrived at the Barmouth Bridge Peter Clive and Jack bid us adieu One 200 of the challenges of being the support driver is that you need to be at the end point 210 with the car so off they went to diligently fulfil their responsibilities The views of the Afon Mawddach River to our left and Cardigan Bay to the right were breath taking I enjoyed a quiet moment absorbing the serenity of the sea as this would be our last view of the coast until Cardiff After paying the seventy pence toll Andrew Dan and I set off on the landward side of the wooden viaduct across the estuary and up into the foothills of Cadair Idris When it was possible we arranged to meet with our support driver at a half way point This provided all of us with the opportunity to walk lesser or greater distances depending on how we were feeling that day Given the ease of this morning s walk we all carried on Shortly thereafter our pace dramatically decreased as the trail began to wind up and up and up We walked through forest and open meadow past Welsh Blacks cutest cows ever and lambs The sun was shinning and our mood was relaxed It really was a perfect day The open land gave way to some brilliant views of our next endeavour Cadair Idris the haunted mountain Day 11 for us day 1 for Jack he s ready for the off Day 11 42 One Step at a Time

DaiLy BLog post Last glimpse of the Irish Sea The day the sun shone Farmland seaside estuary meadow forest and mountain Four legs good two legs bad With Peter and Clive approaching the railway viaduct at Barmouth Our walk today was absolutely glorious We began on a hillside several miles above Barmouth Peter our new support driver Clive and Jack meandered down to the seaside with us We stopped for lunch on the Barmouth viaduct before crossing the estuary From here Peter Clive and Jack returned to the car while the three of us continued on We strolled along the estuary for a couple of miles before heading into the forest a welcome reprieve from the heat of the sun We met Peter at a pre determined checkpoint optional bail out point but all decided to carry on for a few more miles to the end point At this point the grade changed mostly uphill Of interest we walked for over 7 miles downhill and on the flat so we were all feeling very good But as soon as the grade changed we all struggled It s not all easy going Clive and Jack join the walkers and had to stop frequently until our uphill muscles moved into second wind Fortunately our walking poles helped to ease the transition four legs are better than two The last section of the walk was mainly across rolling meadows with a view of Cadair Idris in the background Absolutely breathtaking Thought du Jour Andrew your car doors are so sophisticated they re like you they lock up over 5 miles hour It will be hard to leave such a lovely place Jo di Carlo California The pictures help let us all feel like we are there with you Hang in there Keep up the great work Beth Sczempka USA A great day all round company route weather and scenery Walk over Wales 43

0 I m not used to starting my day with a press photographer snapping pictures Par for the course I suppose when you decide to walk 20 across a country When you think of the press don t you conjure up images of flashing camera s and mass hysteria One guy in a late 40 model sedan reeled into the car park at Ty nant jumped out of his 13 July car for all of 20 sec shot two maybe three pictures and off he went 60 Over Cadair I didn t even have time to apply any lip gloss Idris to After a quick trip to the loo we were on our way to explore Minffordd 80 Cadair Idris Legend has it that the mountain is haunted Anyone who spends the night on its slopes will either awake a madman or a poet Fortunately 100 for us we didn t have any plans to sleep here tonight Today s walk unlike yesterday s was a steady slog all the way up A blanket of 120 cloud rests upon the shoulders of Cadair s ridge leaving the sky grey and the air cool a welcome reprieve as we plodded our way up towards the lowest point on the 140 ridge As Andrew Dan and I slowly ascended one step at a time Jack raced up and down and side to side Clearly he did not have McArdle s 160 The final stretch of track up to the ridge zig zagged as the ground steepened yikes Clive positioned himself to my right teetering on the precipice of the trail at 180 least that is how I recall it which provided me with enough courage to move forward in a slow controlled manner Once over the ridge and away from terrifying 200 beautiful views we stopped for a quick lunch break 210 The route to the summit headed east along an obvious pathway rising steadily through the low lying cloud This is where we parted ways Peter Clive Jack and I retraced our footsteps down the windy mountainside back to the car park while Andrew and Dan made their way onwards and upwards I had learned my limits and now was not the time to aggressively challenge them I had too many miles ahead of me We decided to indulge in a hot cup of tea and some sweets We went back to Dogellau and found our way to the TH Coffee Shop a converted hardware shop As seating was limited we were joined Contemplating the heights to come by two locals These gals had wild stories to tell They insisted on sharing their cake with us but only if we shared ours with them At eighty seven and ninety two years young they certainly kept us entertained for the afternoon Now warm and content we raced off to collect Andrew and Dan before darkness fell The last thing Team WoW needed was a madman or a poet Back at the B B Andy arrived eager to join the Team and hit the trails Andy his brother Paul and children joined Peter Clive Andrew Dan and I at George III Hotel for a fabulous meal Our small group had suddenly grown even just for a day Knackered and in need of a good night s rest we all headed off to bed We were a third of the way down the length of Wales Not too shabby Day 12 44 One Step at a Time

DaiLy BLog post Scratch that the rain is back Feeling better on Day 12 compared to Day 1 or 2 Andy arrives from Singapore Rain mist wind Up hill we are typically walking at 1 4 to 1 3 the speed of others Joined by Clive ascending the Pony Path We set out this morning at around 10 am under a blanket of cloud As we glanced up at Cadair Idris the peak was hidden by the mist Shortly after we made it to the ridge the rain began to fall Following lunch Andrew and Dan carried on to the peak while Stacey Peter and Clive made their way back down the known path A tough decision for Stacey but a necessary one in order to avoid anxiety tense muscles and potential further muscle damage As we made our way up the mountain we were passed by many enthusiastic walkers We figure our uphill pace is approximately 1 4 to 1 3 the speed of the average walker Slow and steady all the way After walking for 12 days Dan and Andrew have noticed that they are able to walk further distances and climb higher elevations before having to stop and rest something they were unable to do for the first few days Stacey has not experienced this to the same degree as she had a three day break last week Andy arrived from Singapore this afternoon and is joined by his brother and two children They all plan to join tomorrow s walk Welcome Andy Thought du Jour Ninety nine of the time when there are southerly winds it doesn t rain Alfed Guess what Alfed the wind is southerly and it s been raining since noon Considering all the route options Dan strikes a pose in the mist All quite amazing and so inspiring Finding useful what you re learning practically about McArdle s too Keep posting folks And well done Cheryl Ellis UK Another summit view lost in the clouds Walk over Wales 45

0 The Talyllyn Railway running from Tywyn to Nant Gwernol just above Abergnolwyn is popular with visitors to the area Time 20 permitting we hoped to take a ride on the narrow gauge railway But first we had to get there Andrew Dan and I met Andy and his 40 brother at a car park seven miles back from our finishing point for 14 July the day The skies were threatening rain what else is new 60 Down the There are a couple of firsts today Andy is walking with us for the Tal y Llyn first time Should be manageable However Andy is joined by his valley 80 brother Paul and his two children Henry and Alice none of which have McArdle s My first thought is uh oh How will I ever manage to keep up At 100 this stage of the walk I ve safely figured out Andrew and Dan but non McArdle walkers This is going to be disastrous 120 As we made our way up the first hill our tight knit group began to unravel and fast Leading the way was Paul followed by Henry and Alice no surprise there 140 Andy would then race up the track literally run up the hill only to stop rest and recover Andrew Dan and I were gobsmacked as we steadily pulled up the rear Slow 160 and steady one step at a time Through rain and forest sun and paved road we plodded along The path wound 180 its way back down the hillside dropping us on the shores of a glacial ribbon lake Apparently Tal y Llyn Lake is the flattest lake in Wales At least that s what Andrew 200 believes Now I did some research and there is no geographical mention of flat lakes 210 but for what it s worth I kind of agree with him By mid day we had arrived at the finishing point feeling strong and energised We had a choice to make take a ride on the first railway in the world to be preserved as a heritage railway by volunteers or plod on and knock off some of the following day s long trek In keeping with McArdle logic we settled for option B Peter ferried Paul Henry and Alice back to their car while Andrew Dan Andy and I tackled the steepest lane way ever By strategically using our poles making them shorter for the uphill and zig zagging our way to the top in order to reduce the angle distance ratio we tackled the final mile despite being passed by an elderly couple part way up the hill Sigh No matter we were now in a fine position for our morning s walk Andy s brother Paul plus Henry and Alice in bin liners walked with us for the day Day 13 46 One Step at a Time

DaiLy BLog post Long steep slopes An easy day at last Andy finds another use for his walking pole Dan goes for a swim Zig zagging Extra mileage The team was joined this morning by Andy his brother Paul and Paul s two children Despite the rain and lack of rain gear bin bags don t count they seemed to have a great time Let s hope they dry off before they return home After starting on the flat we began trekking up a rather steep slope for about a mile ascending 360 ft 100 m With frequent stops we successfully made our way to the top Throughout the climb we all compared notes about our different strategies For example one strategy was to progress very slowly and continue all the way whereas another was to walk quickly then stop and rest It has been so valuable for the four of us to walk together to share our experiences and learn from one another We arrived in Abergynolwyn alongside a riverbed Dan spotted an ideal photo opportunity and jumped into the river film camera and all Before long most of us joined him for a refreshing dip up to our ankles at least In order to get a head start on tomorrow s walk we decided to forge ahead The next mile was up another very steep slope and would be a very difficult walk first thing in the morning Here we employed Andrew s patented zig zag method up the road It proved to be very helpful as it reduced the angle and intensity of the climb Andy was a few paces ahead of the rest of us but suddenly came down toward us in a bit of a Zig zag technique up the very steep final section The rain kept on all the way along Tal y Llyn lake fluster He had used his pole to poke a wasp nest which he realised after the fact Fortunately no one was stung and no wasps were injured New rule of the road poles are to be used ONLY for walking It goes without saying but it is raining again quite heavily at times On the up side no need for showering or laundry Thought du Jour I think this is a McArdle s convoy As we sit in stop and start traffic Love seeing your photos every night cannot wait to be there Please book the sunshine Charlton Thear Canary Islands End of the day on a high literally Walk over Wales 47

0 Andrew s car struggled to climb the hill we had conquered at the end of the day yesterday confirming the magnitude of our ascent 20 Once at the top we adjusted our poles checked the map and arranged our gear Before setting off Peter provided us with a brief 40 history of the abandoned slate quarries and derelict buildings we d 15 July pass along the way Today promised to deliver some fabulous photos 60 Hills and forest Powered by one of our last homemade meals courtesy of Alfed Abergynolwyn we set off for Machynlleth sometimes referred to colloquially as to Machynlleth 80 Mach Our route would take us through dense forests across open meadows down paved roads and to the far side of forestry operations I suppose this 100 was the most direct route but was it the easiest We d soon find out 120 An hour or so into our walk we arrived at a fork in the road this 140 would not be the last time this happened The map was telling us to 160 go in one direction the trail another Eeny meeny miny mo which way 180 should we go Off we went and back we came thirty additional minutes 200 make that 210 5 miles 210 Certain of our direction Andrew led us deep into the darkness of a Thank goodness we did that steep climb yesterday afternoon dense forest One step at a time I couldn t help but wonder where the hell was I going As my apprehension grew Andy s blood sugar dropped Fortunately we had Kendal Mint Cake on hand a glucose based confectionary Day 14 Stacey bravely leads Andy into the scary darkness of the dense pine forest 48 One Step at a Time

known to mountaineers and explorers for its high energy content By the time we ascended to the ridge above it was time to refuel and have lunch It was also a great place to more properly determine where the heck we were Lunch was followed by a second wrong turn Being lost in the woods was getting old It was then Andrew coined the phrase We are not lost we just don t know where we are If he didn t know where he was I most certainly had no idea where I was Now I thought would be a good time to PANIC Needless to say we found our way to Machynlleth the path was long our feet were damp and our gear was a little more worn than when we set out in the a m What s important though is that we were prepared We carried maps and a compass We had multiple cell phones first aid kits and emergency snacks Our support driver knew our route and we did not panic thanks to our illustrious leader There surely was an easier route but the challenges we faced today made the reward of achieving them that much sweeter Tonight we celebrated at a posh restaurant the Mawddach Restaurant Stunning views of all we had accomplished were just outside the window Well we re here and we ought to be there I think Andy s first summit Why do they keep smiling Mud sometimes 12 inches deep Walk over Wales 49

Daily Blog Post I think our map is lost in the MUD Knee high mud We break open the first aid kit Sometimes all you can do is laugh Kendal Mint Cake Track or stream Dan is not bothered Mud too deep to risk stepping in caused by forestry machinery Dan Dan the gaffer tape man Not only his rain poncho but now also his right boot are held together with large quantities of black tape This is how the day began A beautiful walk through a slate quarry carried us through to second wind Despite the fact our trek was on the uphill right out of the gate we were feeling great until Andrew pulled out the map and a decision had to made which way do we go The map indicated our route was to veer left faithfully we did just that About 45 minutes up a rather steep incline Andrew began to question our decision we were headed NW but should ve been travelling SE Back we went In the midst of our mis guided journey was a rescue mission a 50ft retracement as the map fell from Andrew s jacket on a narrow steep section Ahhhh I don t know where we are Andrew A very narrow path was found and up we 50 One Step at a Time Emergency repairs with gaffer tape went heading towards the thick of a conifer forest Now this wasn t any old forest it was dark and ominous Blairwitch like see photo on page 48 After heading into the blanket of darkness Andy became a little light headed Kendal mint cake emergency energy bar resembling a brick of sugar provided by Stacey got things back on an even keel Stacey tried some and immediately felt a cavity coming on Stagger stagger squelch Before lunch all of us had soggy shoes as we squelched our way up through a fir lined bog up and further up until we reached cloud cover The sun came out briefly only very briefly After lunch we took the road less travelled by it was the wrong road so another backtrack along the ridge to the highest point before dipping back into the forest We stumbled upon a stream or rather a footpath or perhaps a stream masquerading as a foot path followed by a swamp performing the

DaiLy BLog post same trick this was serious sludge 6 inches deep all across the footpath In places we had to use fallen timber to bridge the worst parts In the near distance we could hear forestry vehicles little did we know we d be stumbling directly upon them At this point we had been walking for 51 2 hours and our boots were SOAKED Once we sorted out which direction we had to go there were 5 possible choices we took our first step with Andy leading the way SPLAT Andy s Caterpillar boots gave up the ghost and shed a sole Fortunately Dan came to the rescue with tape to bandage things up a rudimentary fix to get through the day The mud was surreal at best 3 inches deep at worst 12 inches deep For the next 45 minutes we trod as carefully as we could across our man made bridges stepping into the muck only when necessary Of note the difficult terrain could have led to serious muscle injury we were careful so as to manoeuvre through with great caution We finished at the clock tower in Machynlleth Really tough going in thick heather with only a hint of a path Once on the other side we peacefully meandered down the mountain into Machynlleth smiling all the way Today was a good day it didn t rain at least not until the evening and we maintained our sense of humour throughout Is this art McArdle s art Absolutely WOW Wish I was there but at the same time thinking could I do what you just did today Congrats ALL John Reed The photos and the blogs are great Keep going and keep smiling Carol Pearce Wales It s brilliant to see you all taking on such challenges and seeing the funny side of it too Bet the laundry at the B B took a hammering that day Keep smiling you lovely people thinking of you lots Heather Curry week 1 support driver Yes there is a path under there somewhere Walk over Wales 51

0 The weight of the heavy falling rain whipped against my bedroom window waking me from a deep comfortable sleep Joining the 20 boys I sleepily made my way to the dining room one step at a time to bid a fond farewell to our host Alfed before setting off to 40 Machynlleth 16 July Despite being an official rest day we had a busy twelve hours 60 Rest ahead of us First was the move then some work on the blog and Machynlleth to photos followed by a looming deadline for a press release The Aberhosan 80 afternoon was reserved for a short walk before driving out to Aberhosen and a dinner engagement with ceramicist Meri Wells 100 Despite having walked nearly halfway across Wales some of us struggled today on the relatively flat unimpressive walk along the shoulder of the road We took it 120 slow patiently waiting for second wind to take over Was it the late afternoon hour that was responsible for our sluggish start How daft One thing is for certain with 140 the number of collective hours spent in our hiking boots over the past two weeks we all concurred long walks are more favourable to short ones when it comes to 160 McArdle s And with that Peter whisked us off the gravel shoulder and onto Meri s house 180 The stretch of road between Machynlleth and Aberhosan that diverges from the A489 provided a visual palate of various shades and textures of green The road 200 twisted and turned as it softly grazed the rolling hillside This evening was already 210 proving to be magical Peter introduced us to his very dear friend Meri Wells What an honour We spent the better part of an hour wandering around her seventeenth century farmhouse ducking through doorways finding hidden entrance ways and reveling in the sheer lopsidedness of each and every wall Meri took us to the tin shed she works in and up into her gallery on the second floor of her home Her ceramic creatures are extraordinary salt glazed beings that possess a part human part animal otherworldliness When Meri learned of my periodic sense of anxiety she showed me a particular collection of ceramic figures entitled The Worriers She Artist and ceramicist Meri Wells welcomed us to her 17th century home described how all her creatures embody emotions and tensions that lie under the surface of all human beings and relationships The Worrier s job was to provide it s owner with a sense of freedom from angst One now has a home in my dining room Andrew Dan Andy Peter and I left Meri s house feeling rested and enlightened Meri showed us a different way of being in the world of living in the moment and being one with the world around her I feel truly blessed to have met such a wonderful creative strong woman Day 15 52 One Step at a Time

DaiLy BLog post Rest day privileges Relocated Press Release More Walking on a rest day Great Evening Having relocated to Machynlleth we were privileged in the evening to visit the home of ceramicist Meri Wells in Aberhosan Her beautiful 17th century secluded home and studio filled with art and artefacts were a real treat while the feast she had prepared was most welcome washed down with a nice red Andy and Stacey both acquired small Meri Wells originals and were sorely tempted by some of her superb large fired works while Dan tried to capture the essence of the setting on film To see some of what we saw visit www meriwells co uk Peter Telfer visited and filmed Andrew speaking about McArdle s and then the whole group walking up Meri s driveway demonstrating our diagonal ascents Great sympathetic direction from Peter meant a fun session and we look forward to the finished product Brilliant that he made time to join us and will edit the material for us www pixelfoundry co uk We also found time to knock a mile and a half off tomorrow s journey which includes plenty of uphill slogging and crafted a press release which will hopefully gain more coverage Andrew interviewed at a table made from a slate sign Meri has repaired the house some outbuildings still to do Dan if you drink the beer before the bottle has no weight and you cannot repair your boot Andrew please send me an autograph soon you ll be the star of the TV Every day I fall more in love with Wales and those green fields I can not stop looking at the blog and giving all my support Marcelo Argentina At every turn were unexpected characters Walk over Wales 53

0 According to the Met Office July in Wales is supposed to be in the top tenth percentile for sunshine throughout the year And yet it is 20 RAINING again I was wearing multiple layers to keep warm and a rain jacket rain pants and a hat I even had a cover on my 40 backpack I was dry but drowning in my waterproofs 17 July The morning route led us along lane ways trails and cow 60 Machynlleth to pastures We climbed up and down stiles and were constantly Nant y Moch second guessing which direction to go Is it right or is it left Just as Reservoir 80 the rain gave way we located the correct path Off came the layers of rain gear I managed to find room in my pack for everything barely now all I had 100 to do was carry it for the remaining eight miles I secretly hoped that one of the guys would take pity on me and offer to lighten my load Then it donned on me they 120 have McArdle s too Oh boy It was nice for a change to bathe in the warmth of the Welsh sun even if only for 140 a short break before continuing our trek through the Cambrian Mountains The land is predominantly covered by peat and overlain with moor grass It is an empty 160 beautiful area where you are likely to meet few other people over the course of a day English travel writers affectionately refer to the area as the Desert of Wales not 180 because it is arid but rather because it is largely uninhabited by humans I guess I won t find anyone else to carry my pack 200 The balance of the walk was peaceful and quiet We marched along one step at a 210 time in single file deep in our own thoughts The silence was all around us it was practically deafening At one point I found myself at the back of the pack As if by position alone I began to feel myself slipping further and further behind the group Up in front is where I am most comfortable I thought I ll have to be sure not to let myself end up back here again Just as I was beginning to feel like I d walked far enough Peter came into sight I must have looked exhausted as he offered to carry my pack I really wanted to maintain my Day 16 Plymlymon calls us in across the vast expanse of the Desert of Wales pride and say no but the mere thought of walking the last half mile pack free sounded way too good Before I could utter the words yes please I had unfastened the straps of my rucksack releasing the weight of the world onto the boggy terrain before me With a newfound spring in my step we made our way back to the car then we drove past the Nant y Moch hydro electric reservoir and home to Machynlleth 54 One Step at a Time

DaiLy BLog post We re not lost we just don t know where we are On the missing list 7 hours 15 minutes Beautiful scenery and inevitably Dan takes a dip SUNSHINE We set off in the rain and after walking for a long time with several detours we hit Glyndwr s Way and followed it simply because we knew where it ended though not where we joined it We weren t lost we just weren t certain where we were Once we returned to the correct path we came upon a farmer herding his sheep who seemed to know everything about us Peter had expected us earlier and had clearly stopped for a chat leading the farmer to comment in a lilting Welsh accent Ah you four must be the ones on the missing list He then spent a good deal of time explaining our route for the rest of the day Finally at just before 2pm as we stopped for 20 minutes for lunch to our surprise the sun came out Steep steep long long slog slog slow and steady was the order of the post lunch session worth it upon reflection as once we got to the top the views were stunning It opened up into a vast green landscape and we got our first views of tomorrow s peak Pum Lumun tomorrow will not be Andy or Stacey s favourite day of the walk a rain dance may be in order tonight As we neared the end of today s journey we came to a stream initially there seemed no way over it or round it Thankfully before we waded through the river Andrew consulted the map and spotted a foot bridge Dan was clearly A long steep climb up through forestry Unpronounceable to anyone but a Welshman disappointed by this as after we had crossed the bridge he dropped his pole into the stream and shortly thereafter fell in after it A long day but another day of achievement and thankfully a day with sunshine What I fi nd really useful in your blog is the practical stuff That sort of experience and knowledge will be priceless worth it s weight in gold Cheryl Ellis UK Crossing the stream at the top of Nant y Moch reservoir Walk over Wales 55

0 While Andrew fastidiously worked out an alternate route Andy and I secretly applauded Mother Nature s deliverance of rain and thick 20 mist Of course we knew we d still have to deal with the inclement weather but at least it would be from the safety of a low lying route 40 Pumlumon would have to wait for another day 18 July Besides we were all becoming experts on walking in the rain by 60 Nant y Moch now I think Dan was even getting used to the feeling of sopping wet to denim against his skin The biggest hurdle centered around Pont Rhygaled 80 bathroom breaks Going to the loo in the wide open expanse is something I ve had to become accustomed to But dropping my drawers in torrential 100 downpours has proven to be more challenging Trying to precariously balance out of sight and in such a way so as to not overly strain my quadriceps was no easy feat 120 Today presented us with a variety of 140 extraneous variables The weather was poor 160 rain and low lying cloud The winds were 180 strong and the ground was water logged I don t 200 expect the path would 210 have been any easier to find in the absence of these taxing conditions But seriously how many times can you get lost in the rain Again perhaps a silly question to ask if you re hiking in the remote hills of Wales Our illustrious leader continued to direct us up the hillside Not an easy route Every step was arduous we had to carefully choose each step ensuring not to twist an ankle damage our muscles or lose a pole Slowly but surely we make our way up one step One of the feeder streams coming from Plymlymon into Nant y Moch at a time continually fighting the primitive desire to move quickly out of the weather If given the chance to walk up or down a hill Andrew seems to always choose the high road I should have known It took some time but we made it and sure enough there was the path Why is he always right Cwm Clyd Isaf welcomed us with a warm loving embrace The beautiful house in the valley would be our home base for the following eight nights Peter said his goodbye s while Sally Andrew s baby sister prepared dinner Dan Andy and I were thoroughly enjoying the hospitality of the Wakelin siblings Day 17 56 One Step at a Time

DaiLy BLog post Wash rinse repeat Lost again Rain dance success Rain heavy rain Mist thick mist Hello Arrived at Cwm Clyd Isaf Zig zag after too long a snack break sheltering from the rain in the car Today we were to ascend Pumlumon but mother nature had other plans or perhaps Stacey and Andy s rain dance to avoid the peak worked The morning was met with heavy rain and thick mist Back to the drawing board for Andrew a new route had to be worked out Peter dropped us off where we left off yesterday note we drove 3 miles down the road just to walk back now that is what you call dedication Into a head wind we strode uphill It was slow going but steady Off to the left we veered onto a track leading up and into the forest Half way up we stopped for a quick lunch break The weather was cooperating at this point so we carried on leaving our dear support driver behind in the mist The track continued for quite some time a very pleasant treat despite the continuous incline Just as we settled into a comfortable pace the track came to an abrupt halt We turned around 360 degrees and did not find an obvious path After consulting the map we were no clearer but decided to move onwards and upwards It seemed as though every other step we took landed us in a foot of water par for the course I suppose As we made our way along one confused step after another we heard a voice coming from within the thick of the forest HEELLLLOOO We never did see who was calling out to us This was the most difficult leg of the day as the terrain was very uneven causing us to take very steep cautious steps In order to avoid Lovely scenes despite the wet muscle injury frequent rest stops were taken despite the heavy rain The path was finally found of course at the top of the ridge We made our way down the road and to our waiting car that whisked us off to Cwm Clyd Isaf Andrew s beautiful home Well done to all who are walking I did my little sponsored walk last week felt quite proud of myself Will keep an eye on you all from now on Margaret Carter Kidderminster UK Meeting the support car totally soaked but still smiling Walk over Wales 57

0 At the beginning of this journey I was anxious and afraid I was not the kind of person that took risks any risks If there was a chance 20 of failure I stayed away I comfortably led my life this way for as long as I can recollect 40 There s something about living with a disease that remains 19 July nameless and faceless for the better part of three decades I still 60 Over remote vividly remember the overwhelming feeling of utter embarrassment moorland to as my leg muscles would begin to stiffen and my heart would race Cwm Ystwyth 80 out of control forcing me to stop dead in my tracks Who was I to know my skeletal muscles were desperately searching for energy unable to convert 100 glycogen to glucose Some doctors told me my hips were over rotated while others instructed me to 120 take beta blockers to manage my idiopathic exercise induced tachycardia Regardless the consensus seemed to be that I was unfit lazy and out of shape How 140 could this be I tried everything I ran I rowed I walked I cycled I took fitness classes I practiced yoga And yet the problem never went away At the beginning of 160 every walk of every activity my muscles would fatigue and my heart would race each and every day 180 And so I avoided engaging in activity with others what was the point I just couldn t keep up I d walk unaccompanied to meet colleagues for lunch and would 200 exercise alone Anything else was too risky Problem solved 210 But here I am hiking through Wales doing something I desperately avoided for years I no longer was afraid or embarrassed Walking with Andrew Dan and Andy one step at a time has enabled me to understand that I can do anything I set my mind to McArdle Disease is and always will be a part of my life but it is not my life So today I happily trod up and down the hills of Wales with my newfound developing courage and acceptance of this rare metabolic disease I hope I can hang onto this feeling forever Could you Despite my life altering realisation old habits die hard Upon finishing the day s walk the overwhelming urge to forge ahead and lessen tomorrow s mileage got the better of us We happily set off down the road to knock off a couple extra miles Gotta try to stay ahead The day s efforts were rewarded with a hearty dinner After which we treated ourselves to a drink at the oldest pub in Powys and possibly Wales The Red Lion Inn at Llanafan Fawr c 1188 Despite the late hour and my ever growing fatigue I am feeling stronger than ever Andrew s dream has become the catalyst for our collective understanding of how much we can achieve Dan strides out taking the lead as navigator Day 18 58 One Step at a Time

DaiLy BLog post A tale of two valleys Valley peak valley peak valley nuf said Wales never looked so beautiful with the sun on the hills Poleless The long way round We didn t get lost today A perfect McArdle s start an easy level track down the Wye Valley not for long After a sharp left into the car park we crossed the river Wye a question we ve been asking ourselves for days now The very obvious path headed into the forest alongside the riverbed Although we had many alternate path choices we continued on with Dan at the helm one correct heading after another He then directed us up a path off to the right you guessed it up another hill To our dismay the path narrowed and was covered by long grass and tussocks which made trekking very challenging Off in the distance we spotted the gate that we had to pass through only problem was there was a bull and a herd of cattle in the way Now for many the 100m dash would be feasible but we made a reasonable McArdle s decision and went around We shared our lunch with a swarm of gnats needless to say half a sandwich later and off we went down into the next valley Of course at this point in the day we are typically VERY excited but not today as we were informed there was another hill to get over The next climb was a soaker but the end was near When we arrived at the car park we opted to carry on down the road a couple of miles to lessen tomorrow s trek Dan decided to experiment today and go poleless the verdict is that the poles are really valuable as they help distribute the load and effort Towards the end of the day Dan dug his poles out of his rucksack to aid him getting over the last hill Thought du Jour Wye oh Why Taking a breather on a long steep ascent Trying not to get wet feet on this rare dry day I guess you know by now you are carrying McArdle sufferers from all over the world on your backs We may not be trekking the walk physically with you but we are following you every step of the way We would all love to be with you Great going Lorraine Baguley Australia Walk over Wales 59

0 I wonder if we weren t too focused on our journey forgetting to take caution during the remaining sixteen hours of the day While getting 20 prepared to set off for the day Dan strained his abdominal muscles This is always a concern as sometimes it can be difficult to 40 determine the degree of muscle damage Dan made the decision to 20 July join us for the day as today s walk was an easy route along the old 60 Cwm Ystwyth Elan Valley Railway with the recourse to opt out at any time to Garreg The rain was relentless but so was our determination We Ddu reservoir 80 carried on one step at a time with the knowledge that tomorrow was a rest day Besides you can t get wetter then wet 100 The Elan Valley is situated in the county of Powys and consists of seventy square miles of moorland bog woodland river and reservoir The dams and reservoirs of 120 the Elan Estate provide enormous quantities of water to the city of Birmingham approximately 118 kms away I was comforted with the knowledge that at least Sally 140 knew our whereabouts in this otherwise desolate landscape The huge skies eventually cleared and we caught a fleeting glimpse of the sun 160 Now would be a good time for a quick break Sally joined us for our final rest stop before planning to meet up with us at the Visitors Centre We managed to get 180 through the gate before Sally called out to us the car had given up and refused to start 200 Andrew attempted to call his mechanic no cell service Sally then tried with the 210 same result Thankfully my international roaming package picked up one bar provided you were standing in just the right spot just enough to place a call Three hours later with empty lunch bags and lifeless cell phones help arrived in the form of one guy and his van Despite the rain mechanical failure and long delay the Elan Valley with its deeply incised valleys and remote landscape left us speechless The west east Despite all the rain the Elan Valley reservoirs were all rather depleted route across this isolated part of Wales can only be described as breathtakingly majestic and gracefully alluring You just never know where beauty will find you Fortunately we will be back tomorrow to complete the final two miles along these beautiful reservoirs and impressive dams Day 19 Stacey takes a nap on a sculptural bench beside the trail 60 One Step at a Time

DaiLy BLog post Breakdown McAnical not McArdle It rained we walked we got wet car broke down we quit All in all a great winter s day in the Elan Valley Three ready for the off while Dan deals with his blisters Having conquered Snowdon and Cadair Idris Dan got a cramp in his abdominal muscles at the house early this morning We contemplated bringing forward the rest day in hindsight we should have but for other reasons We started in light drizzle up a long incline and as we climbed the rain got harder we have come to realise though that there is only so wet you can get Along the Elan Valley reservoirs the views were quite stunning and the rain has made everything green and lush We met a group doing their Duke of Edinburgh Gold award 80 km in four days plus carrying their kit On the post lunch downhill trek we even kept pace with them briefly As we descended one side of the reservoir we noticed driver Sally on the other bank waving frantically we assumed she had broken down we found out shortly afterwards at the next meeting point that she had simply seen the sun En route we passed through Devil s Gulch and many spectacular views After departing for our final meeting point and the last few miles Sally called after us this time the car had given way and refused to start We tried coaxing it but to no avail in fact for 20 Old railway line through Devil s Gulch minutes the alarm refused to be silenced We waited disappointed in the rain for a few hours and eventually the cavalry arrived the car was temporarily started so we decided to head to the warmth of base camp We will be back on our rest day tomorrow to finish the day properly I am becoming addicted to your blogs and photos I don t know what we will do when the walk is over Thank you Andrew we McArdle ites now know anything is possible if we listen to our bodies Lorraine Baguley Australia Craig Goch dam early 20th century water supply network Walk over Wales 61

0 It almost seems pointless to check the weather forecast At some point in the day it IS going to rain Today looked promising though 20 Andrew s back garden was bathed in streams of sunshine Thirty minutes later we were back in the Welsh Lake District to complete 40 the remaining two miles Just as we stepped out of the car the 0 July heavens opened up splat 60 Garreg Ddu to Dan taught us that weather is just weather whether we like it or the Elan Valley not We had just under two weeks left to get to Cardiff rain or shine Visitor Centre 80 Oddly enough I think we were all beginning to enjoy the challenge the elements presented us I certainly don t think I would have drank as much tea had 100 the days been warmer though After touring the Elan Visitors Centre we made our way back to Andrew s house 120 to re group Andy Sally and I fancied going to the Royal Welsh Show leaving Andrew and Dan to attend to more serious matters of this and that 140 Over six and a half million people have passed through the gates of the Royal Welsh Show since it permanently moved to Builth Wells in 1963 And now we could 160 count ourselves amongst the many Unsure of what we were getting ourselves into we jumped on the bus with an open mind What I didn t quite grasp was that the show 180 was an agricultural show and therefore has a concentrated focus on farming Nevertheless we happily wandered one step at a time into and out of vendor 200 stands selling manure spreaders Wellington boots and bull semen We sampled 210 sausages and cider ice cream and chips Just another day in the midlands The afternoon passed with a casual lack of concern until Andy spotted the BBC Radio Wales booth broadcasting live with Roy Noble Donned in our Walk over Wales t shirts we approached his assistant with the excitement of prepubescent teens Either keen to hear our story or anxious to see us on our way Roy agreed to a quick interview about our pilgrimage Andy and Stacey got a spot on Roy Noble s national radio show at the Royal Welsh from Great Orme to Cardiff A job well done I d say wait till Andrew hears about this With dinner in hand we casually made our way back to Cwm Clyd Isaf eager to tell Andrew and Dan all about our adventures including our national radio broadcast As Dan prepared Welsh Cakes under Sally s supervision Andy and I rambled on about the fascinating afternoon we had It took awhile to convince Andrew we really were on BBC Radio Wales In fact he went online straight away to confirm our tall tales All in all we had a good day It may have rained but we didn t get lost I wonder would a new pair of wellies fit in my suitcase Day 20 62 One Step at a Time

DaiLy BLog post Rest day walk Royal Welsh Show Radio Wales Sunny skies pre walk rain during sunny skies post walk Car park trauma Royal Welsh Show otters pole climbing and BBC Radio Wales Raining again All hail to the Illustrious Leader Over breakfast we basked in the warmth of the morning summer sun that was streaming in through the kitchen window Shortly thereafter we headed back to the Elan Valley to complete the two miles we missed yesterday due to car troubles With a spring in our step we jumped out of Andrew s Renault and started down the path 10 minutes later the heaven s opened up back to WoW reality We were very fortunate to have walked through this elaborate reservoir system suppling the English midlands despite the rain Fortunately we only had a couple of miles to knock off before reaching the Elan Visitors Centre and a cup of tea Back at Andrew s house the sun made a repeat performance of course we weren t walking at this point In the afternoon Andy Sally and Stacey took advantage of the rest day to visit the Royal Welsh Show which was an eclectic mix of rural life meets flea market meets livestock Our first challenge was managing the short incline from the park and ride spot we were directed towards to the waiting coach Despite our morning walk we were forced to stop at least twice as the bus driver waited patiently luckily our WoW T shirts offered an explanation Sigh the frustration Once inside the showground we came first upon a fly fishing casting competition though we weren t able to discern what a winning technique looked like From there we witnessed one of the most bizarre exhibits imaginable a somewhat eccentric lady of a certain age eating yoghurts while two otters roamed freely inside her voluminous sweatshirt quite what was the intention was unclear Onward to the pole climbers who raced up telegraph poles higher than some small buildings stamina most impressive but not a pursuit we will be taking up Roy Noble of BBC Radio Wales was broadcasting live so Andy and Stacey leapt at the opportunity to WoW Wales Somewhat to our surprise our request to be interviewed was greeted with an immediate yes and so we made out national radio debut speaking about WoW and our efforts to raise awareness of McArdle s Roy gave us ample opportunity to get our message across and we are indebted to him All in all we had a wonderful day taking in some of the shows and meandering through the many trade stands Back at home base Andrew kept busy while Dan enthusiastically prepared garlic bread and Welsh Cakes for dinner This will be accompanied by pork and leek sausages and a selection of olives acquired at the show all to be washed down with a flagon of Herefordshire cider from the same tent Dan picks wild raspberries beside the trail We are so intrigued by your walk across Wales We are so thankful that all of you are raising awareness of McArdle s around the world We send a special aloha to Dan Jamie Hawaii Walk over Wales 63

0 After a good night s sleep and a rather delightful lay in it was time to get moving Today s walk would cover nine miles many hills and 20 bring us directly back to Andrew s house via Alt y Clych If I could choose one word to describe today it would be 40 exhilarating We walked for seven hours and didn t see a single soul 22 July sheep and RAF jets excluded The barren landscape challenged us 60 Elan Valley both physically and geographically as we made our way through the to Cwm tussocks one step at a time from cairn to cairn Clyd Isaf 80 After climbing for what seemed like an eternity we finally located the trig point atop Y Gamriw The view from the 604 meter peak was all 100 encompassing A pleasant reward for our exhausting efforts This was one of those days you hate to love With each passing mile the landscape transformed presenting 120 an ever evolving spectacle of colour and form And yet there were so many more miles to go 140 As we descended down a ridge Andrew told us of his walk up there in 2006 when he had such pain in his arms and felt so breathless that he had a lie down on the top 160 Three days later he had a heart attack Andrew was aerobically fit and the damage to his heart was not too severe After treatment he has made a good recovery as 180 evidenced by his ability to walk across a country He now aptly names the ridge Heart Attack Ridge and has repeated that walk several times since 200 We all took a deep breath before carrying on down into the valley Sally would 210 be meeting us to ensure we were all in fine form particularly after the amount of cider some of us consumed the previous night During our brief rest stop Andrew pointed out the path we would be taking back to his place Straight up another hill insert another sigh By this time we were definitely in second wind and so the hills were less of a challenge for us Not having any deadlines meant we could set a pace of slower than slow maybe even slower than that We stopped frequently admired the views and took plenty of pictures Just a few weeks ago I would have doubted my ability to trek through these hills and the difficult terrain I would have panicked at the thought of walking with others having to keep up with the group pace Yet I find myself exhilarated and confident I am happy to be here and I am enjoying the challenge Our last hill of the day was Alt y Clych We Earlier we had been on Y Gamriw at back approached it from the north side up a long steady track Andrew eagerly led us to the edge for a view of his home in the valley below As Dan teetered on the perimeter Andy and I immediately took three large steps back I can t decide if the trek down the steep hillside was made better or worse by the large coarse ferns that dominated the landscape On the one hand the bracken would provide a soft landing spot should I trip and fall on the other one of these fronds would likely cause me to trip and fall Surely if the sheep can make their way through these dense thickets I can too Back on level ground Sally met us with cream tea how delightful Day 21 64 One Step at a Time

DaiLy BLog post Hallelujah Sun glorious sun Mama and babe Humbled Cider is the solution Barnes Wallis Climb every mountain 7 1 2 hour slog The early morning low cloud soon gave way to sunshine and as we settled over breakfast Dan and Andy were in fine fettle after sampling the local cider last night We left base camp anticipating clouds building as we reached our start point but were buoyed to start in bright sunshine sunscreen compulsory We set off for what turned out to be a 3 hour climb from reservoir side to mountain peak past the redundant reservoir that was used as a practice site in WWII for the famous Barnes Wallis bouncing bomb up and up we climbed to the 604 metre peak Y Gamriw where we lunched sheltered by a cairn as the RAF flew up the valley beneath us Lunch over we trekked on over boggy terrain comfortable in the knowledge that Andrew is totally familiar with each off piste step of these hills around his home We quietly passed a family of sheep which posed helpfully for pictures and then headed on to the tops of Drum Ddu Craig Chwefri and finally Alt y Clych At times on steep slopes we slowed almost to a stop taking care to slow ourselves down to avoid pain which enabled us to reduce the number of times we physically needed to stop today Hallelujah we thought as we finally reached the peak of Alt y Clych overlooking Andrew s beautiful house below appropriate as the song of the same title covered by Jeff Buckley has become something of a walk anthem much to Andrew s chagrin Today had been almost rain free until sleet greeted us on the final climb to Alt y Clych Wet again we reached the front door of Andrew s home to be greeted by fresh scones cream and jam and hot tea prepared by Sally which helped revive us To complete the welcome we were humbled to read Cheryl s great posting to the McArdle s Facebook Group page thank you Cheryl Thought du Jour Hallelujah humbled by the magnificence of the hills and all of YOUR love and support We climbed up out of the Elan Valley Under used paths can be overgrown here with bracken Still smiling after the second big ascent of the day I can t imagine how you remain motivated to head out into the wet every day and face those hills Your hard work and blogging are inspiring Jenny Coyne Australia After this experience might you be less likely to overdo it while walking with others and be able to walk at your pace with confidence Terri Chambers San Diego Walk over Wales 65

0 Well on our way to Cardiff the gears were beginning to shift For me at least the journey began as a personal one But as time passed and 20 hills were conquered the realisation settled in I was only a small part of this journey We were walking for everyone else with 40 McArdle s Our struggles and our successes were their s too 23 July In order to convey this message to the masses we diligently 60 Cwm Clyd Isaf recorded each day s travels Andrew had set up a blog on the AGSD down the Wye UK website for ease of communication Our aim was to share our to Builth Wells 80 thoughts and feelings the conditions of the day route distance elevation weather etc and the challenges successes we had At first readership was 100 low but as the days passed the number of followers increased I never imagined how powerful this experience would be We heard from people 120 all over the world One step at a time our team of four was growing the support was palpable It was then we realised this was only the beginning 140 We finished our seven and a half mile walk today in fairly short order There were no hills except for the gentle slope up Andrew s lane way the path was well 160 marked and the sun was shinning It was decided surprisingly so that today was boring we missed the hills and the rain Perhaps even the excitement of temporarily 180 not knowing where we were This left ample time to attend to more important matters the McArdle 200 community We wanted to reach out to more people to empower them in the same 210 way we had empowered one another And so we enlisted the creative genius of Mark Zuckerberg and the power of social media Now having covered all of the bases blogging Facebook press releases and radio interviews we began to think about future plans How could we maintain this forward momentum The decision was made our walk would be the first of many Happy and content with our developing direction we closed the books turned off our computers and shared a relaxing evening with each other Despite the short time together we d developed lifelong relationships The common thread that ran I m sure they won t mind if I give them a friendly cuddle through us may be a rare muscle disease but the ties that will keep us together run much deeper These past few weeks have changed my life Day 22 66 One Step at a Time

DaiLy BLog post Flat dry and over by 3pm feels like a rest day 7 5 miles along the Wye Valley Early finish no hills no rain something missing Today we walked from Andrew s house rather than driving We must be progressing as today s walk seemed like a stroll in the park even starting on the long uphill slope of Andrew s drive presented few problems With no hills to conquer and no rain to endure we are left feeling slightly flat even though we did manage to outpace a family out for a stroll much like today s terrain Good to finish early though as we have plenty of plans to execute with the intent of increasing publicity for the Walk as we near Cardiff With minds freed from focusing simply on the next step our creativity has been given free rein Expect a new WoW Facebook Group we aim to have at least 500 followers by Cardiff We ve decided the Walk may have to be re titled the Inaugural Walk over Wales with minds pondering whether a shorter version perhaps a week could become an annual McArdle s event For us there is no question that climbing hills with fellow McArdle walkers makes what might otherwise seem unappealing a whole new and enjoyable experience The pressure of slowing everyone down has lifted and the need to excuse every stop has disappeared hill climbing is suddenly enjoyable to the extent that an extra walk up Andrew s mountain is being contemplated for our next rest day Fields tracks lanes paths almost all level today Misty views of the Wye Valley Trying out a fly fishermen s access to the river What you re doing is inspirational Today I thought how even God rested on the 7th day Chris Chambers USA A well deserved leisurely stroll After all the hills I m sure this was like a walk in the park Jo di Carlo California This stone bridge is heavy What has Dan seen Walk over Wales 67

0 I d be lying if I didn t say I was nervous about walking with two Doctor s today Andrew s local GP and her husband These aren t just 20 any Doctor s though they are a husband and wife team that run ultra marathons ONE HUNDRED miles 160 km What they can 40 do in under twenty four hours took us about fifteen days Perhaps 24 July we could have pushed that to ten days maybe 60 Builth Wells to I know I shouldn t be worried they re Doctor s and they know Upper Chapel we all have McArdle s But boy do old patterns die hard We met Road 80 them in a car park just outside of Builth As we waited for them to arrive I warmed up by doing laps around Andrew s car if I timed it perfectly I 100 might be able to get into second wind just as they pulled in Sally joined us for the beginning leg of the walk Hard to imagine but we got 120 slightly turned around as we headed out of Builth Back on track again we kept a steady pace talking laughing and enjoying the views 140 The ascent was gradual and quite manageable But somehow I got caught up talking to one of the Doctor s and before I knew it we were approaching the ridge I 160 turned back to see where the rest of the group was only to notice they had fallen way behind I was pleased to be up in front but realised at that moment I d pushed on too 180 fast my legs were starting to speak up Shortly thereafter we paused for lunch it s amazing how much better everything 200 tastes after a few hours of climbing I ate so fast I don t think I even stopped to catch 210 my breath While the others were finishing their lunch Dan and I had fun taking silly photos of one another pretending to hang off a false cliff Now at the top the path led us across open country The skies were grey and the wind was blowing but we were dry where did the rain go It was a pleasure to share our experiences with these two compassionate GP s As we approached the road Sally wheeled up to return them to their car We decided to continue down the road one step at a time and get in another mile Day 23 Leaving Builth Wells with Stephanie Mike and Bella 68 One Step at a Time Saying thanks and goodbye to the Drs Warrick

DaiLy BLog post Ran 100 miles in 22 hours Not any of us of course Back to climbing exhilarating 3 stages of the McArdle s walk GP joiners Cloudy but dry well a slight mist At 10 00 am the WoW Team met Drs Stephanie and Mike Warrick in Builth Wells before meeting the press and proceeding with the day s walk Following a photo shoot we were off accompanied by Andrew s GP and her husband also a GP After a brief stretch on the flat we were feeling fine and moving at a good pace one that Stephanie and Mike were able to keep up with at least so we thought until Mike shared his experience of running 100 miles 160 km in 22 hours Impressive As we strolled across the open countryside Mike and Stephanie listened with great interest as we shared some of our McArdle experiences We discussed the difficulties children have in obtaining a diagnosis As we continued along Mike was impressed with our stamina as we slowly but steadily climbed over 430m an ever improving ability we have noticed In fact we have noticed a distinct improvement in our capabilities over the past few weeks When we began on 2nd July we doubted our ability and were comforted in the knowledge that we could take a day off at any time Within a few days to a week our thoughts had progressed and we were now thinking we just might make it all the way to Cardiff Now that we are in the final stretch we are feeling great and are now seeking hills to climb The weather cooperated with us today the clouds hovered above but only a slight mist fell It s OK we were the other side of the road Dan and Stacey Don t ask Thought du Jour The more we do the more we can do Never doubt that a small group of thoughtful committed people can change the world Indeed it is the only thing that ever has Just found that on a postcard and thought of you Cheryl Ellis UK I work with Dan s mom I m looking over her shoulder to see your adventures and progress I admire everyone s patience and endurance Do I need to have McArdle s to join your group Erika USA A long haul out of the Wye Valley Walk over Wales 69

0 Before we even took our first step we tossed around the idea of doing extra mileage Three days from now we were gearing up for a 20 demanding day over Pen y Fan the highest peak in the Brecon Beacons The more Andrew studied the map the more he feared it 40 may be too much So between now and then we were confident we 25 July could make some headway and reduce that day s mileage 60 Our route today took us from Upper Chapel to Lower Chapel a All the way to Brecon straightforward six miles Despite the easygoing path Andrew had a 80 difficult time getting started this a m one of those seemingly inexplicable mysteries of McArdle s He d had a good breakfast a sound night s sleep 100 we started on the flat huh some days this disease 120 just doesn t make sense So we walked slowly 140 stopped when necessary and within thirty minutes 160 or so were able to set off at our usual blistering pace 180 insert sarcasm It was obvious that the 200 landscape was changing 210 the further south we travelled the softer the hills became They rolled effortlessly one into the other By the time we caught up with Stacey strikes a yoga pose in the middle of grass Sally a few hours had passed I imagine she would ve loved to join us but her support driver duties kept her behind the wheel and on the constant look out for our next rendezvous Without any worry of being exposed to vertical drop offs the walks were becoming easier and easier for me until we arrived at the top of a field and turned a corner The path we were on was a public right of way However it travelled through a farmer s field one that contained a herd of bullocks without any option of circumnavigating them Out running a bull was not an option for us our plan had to be a bit more elaborate One step at a time Andrew inched his way through the field as twenty eight pairs of eyes glared with a transparent spirit of inquiry Andy Dan and I bravely followed a good distance behind him To this day I m not entirely sure what the plan was but we made it through unscathed Tiptoeing past a herd of bullocks was nerve wracking enough but climbing through a thick wall of stinging nettles was tricky but in the end worth it Fortunately the chemical laced leaves gave way to a lush green field and blue skies We took a few minutes to relax and soak in the sunshine yes sunshine I even took a moment to teach the boys Virabhadrasana II Om Time to move on Sally was waiting for us at the ten mile mark Given the early hour and our unwavering energy levels we decided to finish the day at the Brecon Visitors Center two miles away Twelve miles was a new record for us a celebratory drink was waiting for us at The Griffin Cheers Day 24 70 One Step at a Time

DaiLy BLog post Exceeding expectations Two days in one Never mind the bullocks Brecon or bust Ominous presence Finally a cold drink at the end of the day 2011 1 week Pen y Fan taunts us on the horizon all day Nothing but a gentle stroll really Today we started very slowly and kept our support driver Sally close by in case we wanted to opt out at any stage In the end we found our groove and twice pushed on beyond the day s end to reach Brecon Tuesday s leg of the walk The final leg of the day took us along a stream and into town through dappled woods a welcome reprieve from the warmth of the mid day sun We trekked 12 miles through countryside that at times took our breath away it was a real treat and our main challenges came not from the walking but from the farming hazards A field of cows became more of a worry when Andrew uttered the immortal words I don t want to worry you but they are all bullocks He did though lead us gallantly through the field We weren t scared for a moment At each turn it seemed that the peak of Pen y Fan our final major climb was almost taunting us an ominous brooding presence in the distance which now is the only major obstacle between us and Cardiff Dan s exuberance excepted We are now collectively feeling pretty comfortable with the terrain and had talked yesterday about pushing on to Brecon Upon meeting Sally at 3pm it quickly became clear that with only a couple of miles to go we should do just that our reward came when Andrew detoured for liquid refreshments on the way home With the sun setting in the background we began planning for next year as Marcelo said in his recent comment this does not stop at Cardiff We now want to share the experience we have so enjoyed watch this space for plans for 2011 and get that treadmill out Our illustrious leader gingerly eases them out of the way Phew we reach Brecon visitor centre two days in one 12 miles I feel tired just looking at that figure Amazing stuff guys Loving your blog and pics Jenny Coyne Australia Sounds like you all are gaining steam rather than losing Hard to believe Cardiff is so near Thanks for giving hope to others of what is possible Terri Chambers San Diego Walk over Wales 71

0 Who needs REST not us Despite being a proper rest day we had an appetite for more A day without walking now seemed incomplete We had our sights set on the hills surrounding Andrew s house Alt y Clych and Banc Craigol We had already summited the first hill so I fancied climbing the later of the two But first we had 26 July to take care of paperwork work first play after that was the rule Two peaks In the meantime Rob arrived He would take over from Sally from Cwm and be our fourth and final support driver for the journey Over Clyd Isaf lunch we shared stories Rob shared with us his experiences and challenges with McArdle s With two diagnosed siblings and having been a patient of Dr McArdle Rob had plenty to tell With full bellies and paperwork complete we grabbed our boots and ran out the door Dan decided to summit Alt y Clych again while the rest of us Andrew excluded opted for the opposing hill Andy and I reached the peak within moments of one another and let out a collective sigh we made it Not only to the top of this hill but three quarters of the way to Cardiff Although we still had to make our way through the Beacons and one more mountain For now it was time to say goodbye to Cwm Clyd Isaf we were moving on to the Canal Barn Bunkhouse oh dear Shortly after six o clock we arrived in Brecon to unload our gear and check out our new home The list of bunkhouse amenities included central heating a drying room a large covered annex to wash down boots and unlimited hot water What about the concierge in room dining heated pool and wireless internet I suppose my 8x12 room and single bunkbed will have to do We dumped our belongings and headed into town for dinner The Boar s Head seemed like a reasonable place to eat very pub like Until one step at a time we passed through a double set of doors leading to another world Andrew Sally and Rob decided to call it a night after dinner while Dan Andy and I were drawn in by the madcap scene all around us It must be said what happens at the Boar s Head stays at the Boar s Head but be rest assured we all left that night with our eyes wide shut Day 20 40 60 80 100 120 140 160 180 200 210 25 Rob Stacey and Andy point to Dan on top of Alt y Clych 72 One Step at a Time

DaiLy BLog post Twin peaks on a rest day Alt y Clych Banc Craigol rest day madness Rob joins Dr Brian McArdle On to Brecon Sunny again The view from Banc Craigol over Cwm Clyd and onwards in the direction we are due to walk We arise bright and early and proceed to take our time producing press release 3 design by committee is always tricky but in this case it seemed to work slow and steady Once again it was a nice sunny day Rob week four support driver joined us from Dundee this morning and we learnt that he was diagnosed at the age of 20 after suffering renal failure He met Dr Brian McArdle in the 60s and appeared in The Lancet at that time In the afternoon still in the third stage of the WoW we decided to throw in a couple of extra climbs While Dan headed off to summit Alt y Clych Andy Rob Sally and Stacey slowly climbed Banc Craigol Andrew who can walk these hills any time suggested madness was setting in but the views from the top rewarded the effort This evening the ever growing WoW Team is off to Brecon for the next four nights Wednesday s trek up Pen y Fan will be joined by our very supportive family and friends Thought du Jour I don t believe it Andrew See the Facebook group Walk over Wales for McArdle Disease for a full understanding of this reference The rustic sign for Andrew s rustic house Oak trees on the climb up Banc Craigol You guys are managing to capture in words all of the ups and downs of this journey so much so that I feel the excitement and sadness that you are almost at the fi nishing line Kim Velocci Canada Good luck to you all sounds like a really successful journey so far and well done for getting all the press coverage I hope that the last week of your walk goes really well Kathryn Birch UK Walk over Wales 73

0 Spending the past four weeks with Andrew Dan and Andy has been a tremendous experience We set out to achieve the most formidable 20 challenge any of us have ever attempted We didn t just walk across Wales we shared an incredible journey one that enabled us to 40 explore the limits of our boundaries and share with the world all 27 July that we had learned 60 Getting ahead In just a few short hours our tight knit group would be joined by into the Brecon my husband Jorge and Andy s family five non McArdle walkers Beacons 80 Excited as I was a part of me was concerned how the upcoming day s walks would be transformed us against them Would my ridiculously slow 100 pace still leave me feeling self conscious as our family members effortlessly meandered by our sides 120 At this point in our journey I was well on my way to a place of acceptance and understanding I now believed I could achieve most anything albeit at a slower 140 pace What I had to work on though was the pervasive feelings of inadequacy I had to stop comparing myself to normal people One step at a time I am getting closer 160 and closer to achieving that goal For the last time just the four of us laced up our hiking boots slung our packs 180 over our shoulders and walked towards the base 200 of Pen y Fan As we 210 waited under the shade of an old growth tree for Rob to pick us up we quietly reflected on the past few weeks and all that we had accomplished of course Jeff Buckley s Hallelujah was playing in the background With time to spare Andrew Dan and I set off to visit Hay on Wye while Rob Setting out from the canal side bunkhouse collected Jorge from the train station Andy elected to stay behind and settle in for an afternoon nap The world renowned Town of Books a popular destination for bibliophiles did not disappoint With over thirty book stores to visit we enjoyed a leisurely afternoon The day culminated with a lovely dinner all thirteen of us together celebrating Day 26 A perfect McArdle s start along the level canal towpath through Brecon 74 One Step at a Time

DaiLy BLog post The day before Pen y Fan The Boar s Head A walk in the park Family arrive The Boar s Head in Brecon is certainly a pub full of character and characters We had a thoroughly enjoyable evening watching people some playing bar quoits others involved in an odd 4 person version of musical chairs or dog sliding and listening to the juke box Of course Hallelujah was played as was the Wurzels classic I am a cider drinker surprisingly this was a bar standard as one of the locals is known for his consumption of the west country treat A few pints of Ramblers Ruin were reward for the rest day ascents that s right we are now climbing hills on our rest day As it s difficult to leave before your songs come on the juke box and the pub did not close until 1 a m we ended up staying a little later than we had envisaged so lucky we had only a short day today walking from our excellent bunk house accommodation to the lower slopes of Pen Y Fan It looked a little less ominous up close we think until Andrew pointed out that we could not see the peak what we could see was a minor top along the way ah well energy levels are very high presently and we all feel that the walk has got us in better shape than for some time the task will be to avoid de conditioning when we return to day to day life The time to focus solely on this one task has been a luxury and a superb way to unwind We have discussed next year in a little more detail and plan to choose a week in mid July ideally we will base ourselves in one location for the week and we should be able to accommodate a variety of levels of walking ability with the intent being simply to share the experience we Andy and Dan try short stretches on a climb have enjoyed with as many McArdle patients as are interested We intend to provide details of proposed dates by the end of this walk so people can mark it in their calendars and begin to think about planning to join and training for the walk An earlier night needed tonight to ensure we are in top shape for Pen y Fan tomorrow Your courage and strengths are admired by many We are so proud of all of you Adriana USA You have given those with McArdle s a great deal of hope knowing that they too can do things they never thought possible Jo Di Carlo California The rest of the world is catching up with our techniques at the outdoor bookshop On the foothills of Pen y Fan Walk over Wales 75

0 Day 20 40 27 28 July 60 80 Brecon to Taf Fechan Forest Joined by family friends and colleagues our large party ready for the off Our last big mountain day struck me as bittersweet I was so pleased with all that we had accomplished Four lone McArdle ites braving the hills of Wales not to mention our wavering confidence and obsolete glycogen stores Yet I found myself saddened 120 with the prospect of arriving in Cardiff and home to our less sympathetic lifestyles Having this opportunity to spend our days selfishly focused on nothing but 140 ourselves and the walk has been a once in a lifetime experience a true luxury The pace we set and the methods we implemented became normalised within our 160 insulated foursome And feeling normal is not familiar to us so it felt great The question now was how do we carry this momentum forward To be able to 180 comfortably walk with others to carry out our daily activities and do so safely and with ease Zig zagging through my neighbourhood is not exactly common practice 200 Perhaps today would be a reasonable test In total we were joined by eight 210 non McArdle walkers They ranged in age from ten to seventy seven Some male some female But they all had one thing in common access to skeletal glycogen The climb was gentle but persistent we paced ourselves slow and steady One step at a time our large group began to spread out across the ever increasing incline we were pulling up the rear Oddly enough I wasn t too bothered by it Then again we were surrounded by loved ones Relative to the hills we had climbed early in the walk this one seemed easier The terrain wasn t as tough but the distance and elevation certainly were comparable It would seem as though our bodies were responding positively to our increased level of fitness Across the board we all noticed a marked improvement Following a homemade dinner we set off to a local pub to work on our final press release There were only a few days left before arriving in Cardiff and the final leg of this journey 100 Straight up out of the car park Stacey finds a safe place to test her fear of heights Walking poles for the McArdle ites 76 One Step at a Time

DaiLy BLog post Done Done Done last BIG climb Pen y Fan no longer ominous 77 year old leads the way Rain wind climbs sun Steep lots of drops Reinforcements Paparazzi Pete Calming words from Jorge Summit party Pen y Fan Under blue skies we set off up Pen y Fan some of us more uneasy about what lay ahead than others The physical challenge would at the outset of our journey have been a potential concern that is no longer the case but fear of height remains And today certainly challenged us We were joined today by Sue Del Mar co founder of AGSD UK Allan Muir one of the Trustees of AGSD UK and his son Jamie who has GSD Type II Pompe both of whom kindly walked up backwards on some tough stretches of the climb to capture our techniques on camera Stacey s husband Jorge hot off the plane from Toronto and Andy s father Glyn who set a fierce pace throughout the day and children Megan 12 and George 10 also joined us for the climb to the top of this 2 883 ft peak While Andrew s brother Peter and his Jack Russell Jack who must have covered half of the Brecon Beacons provided further moral support Of course they had to amuse themselves and fight the constant urge to speed ahead which they all achieved It was interesting to observe Glyn a carrier of McArdle s trek up the mountain side he very clearly had no problems on what was a challenging walk On one of our frequent rest stops up the hill we were quickly passed by a group carrying a kayak up the mountain we were less intrigued at the time with the reason why but more so by the fact that they overtook us so readily As we reached the higher slopes the winds picked up the skies darkened and nervous tension rose but by taking it slowly and steadily none of us experienced any McArdle s related issues The techniques we have learnt stood us in good stead for this last ascent of our journey to Cardiff Once we had negotiated the steep slopes at the top the rest of the walk was comfortable allowing us to freely discuss our final press release and to talk more about next year At the finish today Peter carefully staged The Team for a photo shoot and our inevitable arrival in Cardiff To wrap up the evening the WoW Team made their way to The Gremlin a wifi hot spot funny enough we met up with the Mayor of Brecon photo shoot tomorrow Thought du Jour It will be long it will be hard there will be no withdrawal Winston Churchill 1940 compliments of a bloke s t shirt we passed on the way up Pen y Fan Woo hoo Way to go WOW Team You ve conquered the challenges all the way to the last BIG climb If there s a will there s a way Great job by all Erika USA Three generations of the Williams family Our objective Pen y Fan A welcome treat on the drive back to Brecon Walk over Wales 77

0 Tonight was our last night in Brecon before moving onto a proper hotel in Cardiff Which meant the end was upon us We all were 20 beginning to feel a little anxious about parting ways You know the feeling you get when the clock is winding down you re trying to 40 live in the moment yet at the same time imprint every last memory 29 July That s what it was like 60 We had a long walk ahead of us it was on easy terrain and Taf Fechan to Merthyr Tydfil mostly downhill Three weeks ago this would have been my ideal 80 walk A well laid out path no dramatic ups or downs and no possibility of getting lost Now the mere idea of this just seemed BORING In fact 100 I think there were more blisters and aching shins today than on any of the previous days walks 120 Navigating my way through the wilderness and possibly getting turned around has always scared me to death Getting lost and having to walk further or getting 140 lost and having to walk further quickly was not in my repertory I ll say it again I always played it safe 160 But walking with Andrew Dan and Andy was so easy there was never any pressure to keep up to move quicker to walk further And so as I began to feel 180 normal for the first time ever my fear of walking in the back country began to fade I was learning to appreciate the remoteness of the hills and the inherent beauty of the 200 great outdoors Formal trails with well marked signage no longer provided comfort 210 but instead felt restrictive So there we were slogging along a ten mile trail to Merthyr Tydfil It was as though I could feel time passing us by all too quickly now I thought Enough I had to remind my self over and over just stay in the moment enjoy today Our last evening in Brecon was a memorable one Mayor Dave joined us at The Gremlin for a drink before we set off one step at a time down the street to our favourite watering hole the Boar s Head The usual gang was in attendance Cider Monkey Pint a Half Guy and Sadie the German Shepherd Tonight we weren t thinking about the end we were rejoicing in the moment A lot of our route is now on disused railways that used to export coal We passed the time reminiscing on the climbs we made the weather we endured and the fun we had We were now mountain climbers and long distance walkers Day 28 78 One Step at a Time

DaiLy BLog post After the Lord Mayor s show Long flat unchallenging tarmac What have we become We say goodbye to the mountains all downhill now After the exhilaration of yesterday s achievement today s walk was more of a mundane slog along roads and a well marked and indeed road like track A few weeks ago we would have looked at a 10 mile walk along such terrain as an accomplishment today under cloudy skies blisters were our biggest enemy Even the bullocks were on the other side of a secure fence today Scenic though it was it did not match the routes we trudged along on previous days Fortunately Jorge Andy s children and niece Grace provided some entertainment along the way 10 year old George proved conclusively that he does not have Type V by running up and back and probably covering an extra mile in the process Plans are afoot to change the planned route for Saturday as it is currently set at 12 miles After today s long and tedious walk we thought it would be a good idea to walk a few miles tomorrow our final rest day in order to balance out the days The WoW Team is looking forward to Still great scenery but getting a bit more urban Hello meeting Charlton a 13 year old McArdle patient from the Canary Islands on Saturday when he joins the team to walk for the three day journey into Cardiff Thought du Jour Savouring every last morsel of time as we make our way into Cardiff May you always enjoy the moments as much as we have on this remarkable journey of discovery On Sunday August 1st WoW version Argentina 10km from my house to the embassy of the UK In support of my friends who walk in Wales Marcelo Argentina Walking poles 20 walking shoes 100 backpack 50 a month long Walk Over Wales with fellow McArdle ites PRICELESS Jo Di Carlo USA Not only have you the WoW team accomplished a magnificent goal we the others have been with you every day in spirit We cannot be prouder or more in awe of you for this accomplishment Janet Johnston Canada Together again Walk over Wales 79

0 Tomorrow s walk was slated to be twelve miles long perhaps too much for Charlton s first day With bags packed and a full day ahead 20 of us we elected to walk six of tomorrow s twelve miles Just one caveat we wanted to do some climbing It would seem as though a 40 paradigm shift had occurred we were transformed 30 July Having traversed through the Brecon Beacons the route from 60 Merthyr Tydfil Myrthyr on to Pontypridd was remarkably different The to Pont y mountainous landscape gave way to a flat over populated trail Gwaith 80 Excited by our metamorphosis Andrew studied the map carefully to find a suitable high level route 100 The road weaved up and out of the industrial cityscape to a vast expanse of nothingness Intrigued by the views we leapt out of the car to get a closer look There 120 were sheep of course and wild ponies wandering through mounds of debris and commercial waste not to mention an array of animal carcasses laying about It felt 140 like we had left Wales and landed in a post apocalyptic wasteland Back to the Taft trail our original route we went With our mountain climbing 160 days behind us we set off through an over stuffed parking lot the streets were abuzz with cars buses motorcycles and bicycles Gone were the sheep lambs and 180 comforting hues of purple heather that blanketed the countryside Although the landscape 200 was unimpressive we 210 reminded ourselves there was still twenty five miles to go Besides weren t these the kind of trails we longed for just a few weeks ago It s amazing how our perhaps just my point of view had transformed Walking in a supportive and understanding environment had the ability to displace any and all reservations One step at a time we made The official photo with Mayor Dave complete with chain of office our way along the paved trail With each falling rain drop I reflected upon the thousands of steps we d taken on this pilgrimage across Wales In isolation both were unimportant but collectively they contributed to something greater In our case that something was how much we really can do despite having The Taff Trail went through some fairly scary underpasses McArdle s Before I knew it we had completed the six miles and were headed to our final destination Cardiff Shortly after we checked into the Churchill Hotel we met up with Charlton our youngest walker and his family Now there were six of us including Rob our support driver from four continents walkers from around the world amazing Day 29 80 One Step at a Time

DaiLy BLog post More rest day walking Mayor Dave Cider Monkey Chicken Land Ta Trail Gently falling rain Best cup of tea ever Charlton arrives 29 days not long now We should make it OK to Cardiff The surroundings alternate from natural to industrial On Thursday evening the WoW Team met up with Dave Meredith Mayor of Brecon at The Gremlin pub for a photo op The Mayor was very intrigued with our journey as we discussed our trek thus far Mayor Dave ensured that Dan was of age by checking his ID Dan followed up with a heartfelt hug To conclude our stay in Brecon we made a return visit to the Boar s Head pub where we were enlightened by our new friend Andrew of Brecon otherwise known as Cider Monkey The WoW Team enjoyed a day s end beverage and a wide variety of songs on the Jukebox As we made our way back to the bunkhouse we happened upon Chickenland of course we indulged in a late night snack The sun rose quickly this morning as we packed up from the bunkhouse in order to head out on the Taff Trail Despite the fact that today was a scheduled rest day we collectively decided that it would be a good idea to knock off some miles today with the intent of shortening Saturday s route Charlton s first day Within an hour of walking the rain began to gently fall a phenomenon The WoW Team is quite familiar with The difference being today s rain was pleasant and refreshing a welcome reprieve from the near drenchings we re used to To end the walk we finished at a quaint tea shop by the Taff River As Rob shuttled Andrew back to his car Andy Dan Stacey and Jorge enjoyed a pot of tea and caramel biscuits preferably enjoyed warm As the team arrived at the Churchill Hotel in Cardiff we were welcomed by Charlton and his family Charlton had needed to finish his school term before he could join us We presented Charlton with his WoW t shirt and look forward to walking with him and his mother Alison over the next few days Congratulations to Marcelo who has been inspired to walk from his home to the UK Consulate in Argentina on Sunday 10 km in total We can t wait to hear from you Marcelo I have thought of you every day I wish you a hugely successful end to your trip and thank you for the most amazing effort on behalf of all McArdle s people Sioned Williams UK Welcome Charlton and Alison I m sure you ll be made to feel very much at home and hope you draw as much from this experience as the rest of the team seem to have done Cheryl Ellis UK The valleys have a lot of terraced housing even up slopes Walk over Wales 81

0 Without any challenges along the route to distract us we were all feeling a tad bit woebegone Despite our heavy hearts we were 20 thrilled to be walking with Charlton and his mum Our walk today began at the quaint tea shop we finished at the 40 day before Not wanting to miss even one square inch along the 31 July route Dan and I ran back down the hill not easily passable by car 60 and stopped directly in front of the cafe Pleased with ourselves for Pont y Gwaith to Pontypridd making the extra effort we proceeded slowly back up the hill to join 80 the others It was important that we started the day exactly where we d left off yesterday afternoon Well perhaps not for me as I had already missed a 100 few days earlier on following my anxiety induced episode of rhabdomyolysis However Dan had not missed one step of this entire journey Impressive 120 Off we went Having walked for miles upon miles together the four of us had progressed substantially in our fitness Starting on the flat generally presented no 140 difficulties for us at this stage But now that we were joined by Charlton we had to be more attentive after all it was only his first day So slowly one step at a time we all 160 continued on the journey to Cardiff Being a popular walking cycling path the Taff Trail was well marked as it 180 followed the course of the River Taff We walked along an abandoned branch of the Taff Vale Railway through residential streets and for a short while back into the 200 trees Boy did I ever miss the seemingly contrary forces of North Wales Peace and 210 solitude set against an unforgiving terrain and the ever changing elements The straightforward route provided ample opportunity for us to get to know Charlton and his mum We shared our experiences with him and in turn he described how McArdle s had affected him It was fascinating to speak with both Charlton and his mum yet another story about McArdle s different but very much the same Day 30 Debate about how much more to do today 82 One Step at a Time The Taff Trail is a really good path mainly on old railway lines

DaiLy BLog post Welcome Charlton Charlton s first day An extra mile No rain well a drop or two Stairs stairs stairs Where is the path Three cheers for Marcelo Sigh A big welcome to Charlton and Alison joining the team Today we headed further down the Taff Trail to the town of Pontypridd and finished by doing a mile of tomorrow s intended route reaching the local cemetery For once there was no rain but unfortunately Charlton did not manage to bring the Tenerife sunshine with him We kept a good pace throughout the day and discussed technique and the importance of regular moderate exercise An odd day for Stacey on the stairs reaching the top of two flights at the hotel this morning her muscles complained but a couple of hours into our walk 70 steps up a steep bank were added just for fun without even pausing for breath In order to give Charlton the authentic WoW experience we headed up what was once a footpath but was now crowded with brambles We braved the nondescript path as we wanted to head off the main road and back into the serenity of the woods Dan fought hard to make a reasonable pathway through the thorns but in the end we admitted defeat thorny scratches aplenty and retraced our steps to the busy road Steps for fun Can this be true As we near the finish it is with mixed emotions joy at what we have achieved but sadness that this fantastic journey is coming to its end at least for this year Each of us has enjoyed each step well maybe there were a few we could have passed on and will leave with a sense of achievement and equally a sense that there is even more we can achieve Tomorrow we will be joined in spirit by our friend Marcelo as he walks in support of WoW from his home in Argentina to the UK Embassy 30 days 70 steps 3 cheers Weather is fair Almost there Mark Chambers San Diego Th is group of folks who started out as relative strangers have become friends to me precisely because they have shared all they have learnt And I too feel I have grown Let s keep helping each other learning and growing Cheryl Ellis UK All deep in thought There seemed to be a diversion of a diversion No longer the youngest but Dan can still have fun Walk over Wales 83

0 Day 20 40 31 1 August 60 80 Pontypridd to Llandaff Cathedral The average person takes approximately 2000 steps to walk one mile That would mean we had taken 394 000 steps to get to this far Not including the countless extra steps we d taken not because we were lost but as a consequence of not being sure of where we were That just leaves 26 000 to go It was difficult to stay in the moment today Our minds kept fast forwarding to this evening our last supper I wanted time to slow down perhaps even standstill at least until I could mentally catch up It was hard to believe we were on the eve of this larger than life odyssey Before arriving in Manchester five weeks ago I questioned my decision to participate in this event on a daily basis if not hourly I kept reminding myself you 120 can do this at the very least give it a go I wavered between feeling confident in my decision and terrified with the unknown My family and friends rallied around me 140 gently pushing me in the direction I knew I wanted to go But something happened while I was here I came to a life altering realisation I 160 learned that despite having McArdle s I can achieve remarkable things I think we all learned something about ourselves It would have been impossible not to 180 With plans well underway for next summer I wanted a firm commitment from my new walking companions that we would all return next year hiking boots in 200 tow So I raised my right hand extended my pinky finger and motioned for a group 210 proclamation of our promise We all clasped pinky s and repeated the phrase pinky swear Done deal When we arrived at Llandaff Cathedral the sun was hanging lazily in the clear afternoon sky With mid afternoon weariness setting in there was no time to loll about we had work to do prior to meeting everyone for our pre celebratory dinner Back to the hotel and our computers Besides there d be plenty of time to relax this evening I snuck away for a few minutes to formulate my thoughts How was I going to articulate all And then there were five And the sun came out that I wanted to say tonight in just a few brief sentences Fears had been conquered strangers became the best of friends and vital life lessons had been learned Sincerity will lead the way just don t forget to breathe I often had to remind myself of this So one step at a time we all made our way down to the hotel dinning room Andrew Dan Andy Charlton and I were joined by many husbands brothers sisters mothers and fathers tonight we were one Good food happy tears kind words and warm laughter carried us through the evening a night I will never forget 100 84 One Step at a Time

DaiLy BLog post So that s what summer walking feels like Sun at last A scenic walk along the Ta A costume wedding Castell Coch Llandaf Cathedral Our penultimate day And now the end is near after today just four short Wakelin miles will stand between us and our objective in Cardiff When we started our journey we were wishing the miles away Now we d all like to add a few more mountains a couple more reservoirs a barrel more laughs and plenty more miles Today though was a great day for walking with the arrival of August summer finally joined us The sun shone all day as we wandered down the Taff Trail leaving Pontypridd heading into the beautiful countryside along earthen tracks through woods and up some decent slopes The hills gave us the opportunity to demonstrate a few techniques to Charlton and by the end of the day we were all moving at a rapid pace along the final level path to Llandaf Cathedral Along the way we passed Castell Coch a recent creation and happened across a costume wedding complete with a beautiful white vintage car our second wedding in two days the first at the hotel was a little more raucous The walk from the castle was all downhill into the outskirts of Cardiff As the path neared the Taff River Dan could not resist a dip whole body soaking and finished the walk just as drenched as we have been on most days end of walk exuberance a plenty and perhaps the 4th stage of the Walk over Wales delirium Now for Team WoW s last supper sob sob and an early night in preparation for the media frenzy tomorrow will bring Thought du Jour With tears of happiness in our eyes we temporarily bid adieu to our new friends our collective journey has just begun Thank you friends far and near for always believing in us in all ways Tomorrow should be very emotional I will need a box of tissues by the computer waaaaa You now all have lifelong friends on different continents and you WILL see and walk with one another again and hopefully many more Type V s You can not only live with but thrive with McArdle s What you all have accomplished is nothing short of amazing Can t fi nd the right adjective Very proud of you all Finish strong Terri Chambers San Diego We ll only be able to put our fingers up one more time Stacey s yoga on a pole Dan can t resist a final dip No Andy we forgot to book a chauffeur driven Roller A crazy idea started a year before is actually coming true Walk over Wales 85

0 I woke early this morning wanting to assimilate all that had transpired over the past five weeks It was hard to believe I d be 20 packing my bags for the last time As I carefully organized my belongings tears began to roll down my face The enormity of all we 40 had accomplished was beginning to take hold 2 August I d better have a cup of tea 60 Llandaff Breakfast was quiet none of us really knew what to say what Cathedral to could we say Words were not enough Instead I decided to leave the the Sennedd 80 boys with a memento of our time together Since a fortunate stroke of serendipity had brought us all together I thought a lucky Canadian Loonie would 100 be fitting Dan immediately put his under the insole of his shoe Andy 120 tucked his away in his wallet and Andrew said What am I going to 140 do with this My bets are he still has it safely stowed away 160 We made our way back to the Cathedral in plenty of time to meet 180 ITV Wales and complete the last four miles Just like the first few 200 the sun was shining and the gentle 210 breeze carried ashore the fresh sea Charlie s youngest brother Jimmy gets in on the act air However this morning I no longer carried with me that old nagging sensation that had been with me for so many years I walked with confidence and ease As we approached Cardiff Bay we slowed down to let our family and friends walk on ahead In quietude we took our last few steps side by side Just for a moment time stood still and the world around us faded away It was just the five of us Andrew tries to get key messages across on ITV News Ahead lay the steps to the Sennedd and our final destination Our family and friends were enthusiastically cheering as ITV Wales filmed the final leg of this extraordinary journey I wanted so much to tell Andrew Dan Andy and Charlton how much they meant to me I wanted to express my gratitude and acknowledge the profound impact this experience had on me But I didn t instead I just walked How could I express all that I was feeling For once words failed me End of term feeling knowing the end was now so close Day 32 86 One Step at a Time

Andy and Stacey get their thoughts on camera This last day was literally a stroll in the park ITV News Wales follows us in to Cardiff Bay and our finish at the Sennedd Welsh parliament And just like that we were here 210 miles 338 km from where we began Back at the hotel we got busy working on our LAST blog As we sipped champagne we reflected back on how far we had come not just in distance but towards a greater understanding of how best to manage this rare metabolic disorder The single most important event of my life had come to a close With bags packed the blog uploaded and train ticket in hand I waited on the steps of the Churchill Hotel with Jorge and Dan for our taxi to arrive Saying good bye to Andrew and Andy would not be easy Perhaps a hug would make it better I extended my neck to it s full range to get a look out the back window of the cab as the driver sped off down the road Within minutes my friends had disappeared out of view As Winston Churchill once said Now this is not the end It is not even the beginning of the end But it is perhaps the end of the beginning And so I will march forward to my new life one step at a time Walk over Wales 87

Daily Blog Post Our journey begins The final supper ITV News Wales Barely concealed emotions This trip ends but the journey continues Summer has arrived The steps of the Sennedd surrounded by celebrating family and friends Dinner last night for the team along with Sally Rob the whole family Thear big brother Martin and his wife Christine a tear jerking affair with words of thanks from Stacey Dan and Andy for all of Andrew s supreme efforts in bringing this all together This morning we were joined by family and friends filmed at the start by ITV Wales for today s news at 6pm there is a link on the AGSD UK web site In turn Andrew Stacey and Dan fought their emotions as they spoke to the camera it s been that kind of journey but hopefully we will have said enough to get the message across clearly if we can do it so can many other Type V s with the right guidance The morning s walk was pleasant a football came in handy Dan had no opportunity to get wet Cardiff Bay was deemed even by Dan to be a bridge too far and before we knew it was 1pm and we had arrived at our final destination this time around Dan kissed the ground the crowds cheered 88 One Step at a Time Family members of all ages gave us great support So close now getting a bit emotional

DaiLy BLog post We all needed a little quiet reflection before setting off Five triumphant walkers pose for the cameras Reception at the Pierhead Building Welsh Assembly and more interviews followed for Andy similarly struggling to hold it together and Alison A reception at the Pierhead Building allowed time for reflection and to meet Andrew s Welsh Assembly Member and leader of the Liberal Democrats in Wales Kirsty Williams It was great to have so much support today including from Allan Jamie and Barbara Muir who drove from Hampshire again to help us complete the last few miles our thanks to all Thanks also to everyone who has read the blog left comments and shared this journey with us for us it has been a rich experience just to be here and walk but your support has made us part of something much bigger and more meaningful To all who have walked elsewhere well done to Marcelo thank you for planting a seed which we will nourish and which will first bear fruit next summer back here in Wales We are looking forward to 2011 and hope that other Type 5 s will want to join us we know a few of you do already Andrew will be there to lead Andy Stacey and Dan are all committed to the reunion and hopefully Charlton will join us as well We hope to firm things up soon and will publish on the Facebook Group It s been a blast au revoir mes amis Thought du jour What are we going to do with our lives now Hi Team Looking at your fi nal photo you have achieved something most Type 5 s would not have thought possible but here you are at the end of a amazing journey The friendship you have developed will never be broken We are all grateful to you Lorraine Baguley Australia That s it done signing off now Walk over Wales 89

DaiLy BLog post Well done on completing this huge walk It was a real pleasure to accompany you on the Builth to Upper Chapel section and we could see just how fit you had become You have really challenged the presumptions that your disease must limit your fitness You have savoured the joy that comes with time in the mountains and valleys of Wales something that very few people dare to try Hope you have raised lots of money and undoubtedly you will have increased awareness of McArdle s You have certainly taught us lots Stephanie Mike Warrick Andrew s GPs Dan and Charlie share the last map reading It was nice to get to know all of you through this blog and your pictures I have been a part of many causes in the past but never have I felt so connected emotionally I wish you all the best as your own individual journey continues and may you rest easy knowing that you have had such a positive impact on those around you with Type V and without Slow and steady everyone as you deal with Day 33 the dreaded morning after Kim Velocci Your journey is an inspiration I was crying just looking at the pictures and thinking that you have so much to be proud of Nancy Having climbed with Andrew over many years I know something of the courage and determination it takes to be a hill walker with McArdle s A fit walker free of the disease would have found this ambitious trip daunting The effort of will required to keep going each day for a month with blistered feet tired legs and the usual aches and pains caused by climbing and descending and let s be honest who doesn t also have days when they have a headache and just want to stay in bed and to keep on going right through the spine of Wales mostly in the rain and careful not to avoid the summits oh goodness no mean this long distance walk would have proved a challenge to anyone However overlay all these difficulties with the exercise induced pain that is McArdle s and what you have all just done as a group with such obvious humour and friendship is truly remarkable and you need to be very rightly proud of yourselves You can be sure that everyone who knows you is Alan Craig UK Dan s looks unsure whether his T shirt is OK in a cathedral Tears and hugs in front of the TV camera 90 One Step at a Time

waLk over waLes Press coverage A small sample of the press coverage we received as we walked over Wales Most of the papers covered our exploits as we passed their area We make the news stands Dan kisses th e gr finish on ITV ound at the Wales 6pm N ews Walk over Wales 91

Walk Over Wales Epilogue to Walk over Wales Given that the prime directive for McArdle Disease is to engage in regular gentle aerobic exercise the way forward became very obvious this journey would be shared with others we would walk and learn together In the years following Walk over Wales the team has been joined by McArdle walkers from around the globe Australia Canada America England Scotland Wales Spain Ireland Germany Singapore the Canary Islands and the Netherlands Together year after year walk after walk we marvel in our newfound abilities and lifelong friendships Determined and purposeful slow and steady we are changing the world one step at a time On a personal note Walk over Wales taught me some important lessons about life Walking 210 miles 338 km seemed impossible yet we did it I did it We found our way and forged our own path I arrived at the finish in South Wales a new person a more self assured version of my previous self For most of my life I interacted with the world in a less than confident manner The answer to every question was unfailingly I can t do that Until my diagnosis age 36 I felt inferior and incompetent Diagnosis brought relief and understanding but trying to erase a lifetime of negative thoughts wasn t easy WoW enabled me to accomplish what I perceived to be impossible meet others that are similarly affected and take those important first steps towards acceptance and ultimately a fulfilling life Today my journey continues when I find myself feeling a little bruised and defeated I reflect back on the mountains I conquered the miles I triumphed over and the friendships that emerged Stacey L Reason 92 One Step at a Time

one step at a time Moving forward Development of a course for people with McArdle s to learn how to exercise safely and extend their boundaries The first Walking with McArdle s course Snowdonia 2011 Upon completing 210 miles 338 km and countless hills the people who participated in the Walk over Wales in July 2010 realised that walking as a McArdle s group was enjoyable and confidence boosting This positive experience led to the development of a walking course Walking with McArdle s The focus of these courses is to provide individuals with an opportunity to meet other affected people and share experiences whilst gaining practical knowledge on how best to manage day today life with McArdle s Anyone with a confirmed diagnosis of McArdle Disease can participate However The objectives of the walking courses are to Develop good management of the person s McArdle s Improve aerobic fitness Teach a range of techniques and approaches to improve performance and minimise the risk of injury Identify and eliminate any bad habits that have developed Extend each person s personal boundaries Boost each person s confidence Make walking enjoyable and establish it as a habit Moving Forward 93

individuals must be able to achieve second wind in order to fully participate on the walks Through informal discussion and practical experience the week long courses aim to develop the best techniques for walking with McArdle s Strategies for achieving second wind and learning to use walking poles are two of the topics discussed With improved aerobic fitness the risk of muscle injury is lessened in turn individuals will gain confidence in their abilities and increase their motivation to undertake regular exercise The walks are carefully planned to suit the capabilities of all members in the group Opt out points are planned along the way so that everyone can confidently join the walk for whatever distance best suits them Gabi Johann and Stacey Reason at Bosherton Lakes Pembrokeshire National Park 2012 The courses By the time of this second edition the courses have been run for 6 years and people from 14 countries have participated It is hoped that this will continue to develop and grow Look out for the video on the AGSD UK Youtube channel In 2011 the team ran two walking courses in the Snowdonia National Park The walk routes ranged from level walks around lakes through valleys and along the coast to hill walks from gentle to strenuous Each of the participants experienced moments of anxiety and concern with the idea of walking longer distances and climbing hills but as the hours and days passed everyone s anxiety softened By keeping a slow and steady pace the team climbed two Welsh mountains With newfound confidence everyone finished their course feeling positive and better equipped to manage the day to day frustrations of living with McArdle s These first weeks served as a rich learning opportunity enabling the group to Walks are planned for an easy start on the flat 94 One Step at a Time

the courses better plan for future sessions A recurring theme identified by all who participate is how valuable it is to spend time walking and talking with others that understand Each year since the team has offered courses some again in Snowdonia and some I ve never felt so strong physically capable hopeful and inspired There is such benefit in sharing our knowledge and experience All that and fun too Siobhan Murray USA A more challenging path in the Aberglaslyn Pass in the Pembrokeshire National Park In 2013 they ran a course on Martha s Vineyard off the east coast of America Courses have been run by Dr Andrea Martinuzzi in Italy And a challenge event was held in the Dolomites With each walking course more and more people are realising the potential of their abilities A universal awareness on the part of all participants of being able to achieve much more than they ever imagined has empowered McArdle ites from around the I have learnt more about my McArdle s this week than I did in 30 years from my diagnosis Gabi Johann Germany On an challenge event in the dolomites It was like Boot Camp It was the toughest thing I have done physically and psychologically Dan Chambers USA globe to confidently make walking a part of their daily lives Having branched out beyond Wales the plan is to encourage this development around the world Canada and Germany are in our sights but who knows where else walking courses might be organised We plan to develop organiser s notes and course materials Hopefully expertise will develop potential leaders will emerge and groups in other countries will take up this highly therapeutic and enjoyable approach to helping people with McArdle s Fanastic views along the Pembrokeshire coast great on all fronts health wise fun and meeting McArdle ites A memorable moment was climbing Cnicht and having a group of children race past while being with McArdle s people made it seem normal to be going at a slow pace William O Neill Ireland I wouldn t have attempted anything like this except with other McArdle people At the top of the hill I thought was I heading for heaven I am thrilled with what I achieved this week Lorraine Baguley Australia Seven McArdle people ages 15 to 63 summitted Y Garn Moving Forward 95

one step at a time Afterword I am absolutely delighted that Stacey has taken the time to write down her experiences with McArdle Disease and exercise for it is both educational as well as inspirational Too many of our patients have been given a therapeutic nihilistic view of their disorder and adopt a sedentary lifestyle that leads to isolation and a lowering of their threshold for symptoms and rhabdomyolysis Unfortunately this becomes a self fulfilling prophecy and even daily activities such as peeling potatoes or climbing stairs can trigger events Given that McArdle people experience muscle cramps and occasionally rhabdomyolysis with exercise it would seem to be logical to avoid exercise however the body adapts to exercise by up regulating alternative pathways fat and amino acid oxidation and blood glucose use that can bypass the metabolic defect in McArdle Disease myophosphorylase deficiency Carefully conducted exercise has been shown in several studies to reduce symptoms of McArdle Disease by up regulating alternative energy systems and Stacey s book highlights how slowly progressive and careful training can allow patients with McArdle Disease to attain fitness levels and performance that is truly impressive We have had McArdle people return to our clinic after six months of regular exercise and claim that their McArdle Disease is cured Most are shocked that the activity that previously triggered their disease is well tolerated after a period of careful exercise and dietary manipulation Although regular exercise will reduce the likelihood of rhabdomyolysis McArdle people should avoid exercise on days when their muscles are sore and fatigued and or they have dark urine Furthermore rapid increases in intensity or duration must be avoided to reduce the risk of rhabdomyolysis Overall Stacey s story is inspirational to both patients and physicians and shows how McArdle people can complete activities that even ablebodied people would find difficult Congratulations Stacey and friends you are inspirational Dr Mark Tarnopolsky MD PhD FRCP C Professor of Pediatrics and Medicine Division Head of Neuromuscular and Neurometabolic Disorders McMaster University Hamilton Ontario Canada 96 One Step at a Time

Inspired by the daily blog of Walk over Wales at age 64 I travelled across the world for the learning support and friendships of a walking course I achieved more than I ever thought I could Now others can similarly gain from this inspirational and informative book Lorraine Baguley Australia Invaluable Stacey s book will inform inspire and encourage future McArdle generations David Thompson UK My walking course in Wales provided an opportunity to increase my knowledge challenge myself and experience first hand the bond people with McArdle Disease share One Step at a Time provides similar insights for patients friends and family Rachel Walker USA Walk over Wales One Step at a Time Walking with McArdle Disease Stacey L Reason One Step at a Time Walking with McArdle Disease With each step your heart beats faster your legs grow heavier and realisation sets in you have to stop For those of you with McArdle Disease and for those that have walked alongside it this ritual is all too familiar One Step at a Time traces the route thoughts and emotions of a McArdle patient on a lifealtering journey of discovery and growth Her understanding irrevocably evolves when she walks over two hundred miles to meet it Today walking with others has become a regular event McArdle groups are getting together around the world to walk share and learn from one another in a supportive and safe environment One Step at a Time provides a truly awakening narrative for patients families and health professionals alike Stacey L Reason One Step at a Time I learned to accept what is and embrace what can be in just 210 miles Walking courses UK 12 00 AGSD UK www agsd org uk Foreword by Dr Ros Quinlivan Afterword by Dr Mark Tarnopolsky