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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 a...
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 ...
I   d like to thank  My parents, Bob and Barbara - for without your love, support and defective PYGM genes, this book woul...
Contents Dedication to Jessica Binder   6  Foreword Dr Ros Quinlivan   7  Introduction   8  McArdle Disease   11  Walk ove...
Dedication  This book is dedicated to all those who struggle daily with McArdle Disease and particularly to the memory of ...
one step at a time  Foreword McArdle Disease is often not diagnosed until well into adulthood. Individuals struggle for de...
one step at a time  Introduction How did we get here and why is it important   From early childhood you know there is some...
rhabdomyolysis, renal failure and or compartment syndrome. This is a story that begins in the Fall of 2009 when a handful ...
front of our computers. Our team was dedicated equally to our goal of reaching Cardiff and to that of bringing McArdle Dis...
One step at a Time  McArdle Disease What causes the disease and how it affects those who suffer from it.  McArdle   s is a...
others carried out differently. McArdle   s people also need to take plenty of gentle exercise to enhance their aerobic ca...
One Step at a Time  Walk over Wales  A group of people with McArdle Disease walked 210 miles  338 km  across Wales to rais...
The Route  Accommodation Day start finish Photograph on blog  14  One Step at a Time  Map data    Google 2013  The route o...
the waLkers  Stacey Reason     Canada The challenging walk to piano lessons  all three blocks, on the flat  was the first ...
The walkers  Dan Chambers     USA At age 4, Dan remembers lagging behind the rest of his soccer teammates. At 6, he recall...
The walkers  Andrew Wakelin     Wales Andrew remembers symptoms of McArdle   s from age four. He was always the one out of...
The walkers  Andy Williams     Singapore For as long as he can remember Andy has lived with muscle pain weakness that has ...
The walkers  Charlton Thear     Canary Islands Unusually for a McArdle person, Charlton  known as Charlie  was diagnosed a...
0  Following two days of transit, the moment of truth had finally arrived     the first day of our collective journey acro...
DaiLy BLog post  Only 205 more miles to go          She   eld    to all     McArdle   s and the wind     Why everyone shou...
0  The butterflies in my stomach now seemed more like caged elephants. The beauty of Conwy Castle faded quickly as we set ...
DaiLy BLog post  Just under 34,000 Blogtitle ft  10,400 m  to go...      How many sheep in Wales      Conwy     Blogsubtil...
0  As I settled in to bed the night before, I was feeling tired, homesick and completely overwhelmed. I confessed to Heath...
DaiLy BLog post  Windy, Wet    orrible Wales  WWoW  Blogtitle      Change of plans      Today we tested our rain gear... t...
0  Our thirty-two day journey across Wales was constructed with much needed    rest days    strategically placed every fou...
DaiLy BLog post  I think we   reBlogtitle on the right path...      What flies at 300ft and frightens the bejebees out of ...
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 a...
Just a couple of steps and rest, leaning on our poles, on this steep scree slope.  of God   , it was a forty-five degree a...
Andrew and Dan brave the Cantilever on Glyder Fach, in gusts and rain   legs were screaming for rest. The heaviness of eac...
DaiLy BLog post  Not all theBlogtitle    Glyders    is gold       One giant step for mankind... one small step for McArdle...
0  The pain in my legs reminded me of my poor decisions from the previous day     I would NOT be walking today. For that m...
DaiLy BLog post  And then there were two...      Safety first      Revisions, revisions, revisions...     Hang on for dear...
0  Frustrated. Sidelined. Sore. I am beginning to feel like the weakest link. Which I know logically isn   t true, but whe...
DaiLy BLog post  Upon reflection...      Continuing to recover     Can you say BULL      Slow and steady all the way For t...
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 o...
DaiLy BLog post  It   s raining again...      Rain     5, Sunlight     1     Nuclear fallout     Soggy boggy footsteps    ...
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, l...
DaiLy BLog post  Finally     a real rest day      We   re all exhausted from all of this resting      Beware of Stinging N...
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...
DaiLy BLog post  Talkin    the walk...      Dr. Ros Quinlivan joins the team for the day   s walk     Stacey is back in th...
0  Last night Peter joined the team. My first impression was    this is NOT Heather   . What will this charming man think ...
DaiLy BLog post  Last glimpse of the Irish Sea      The day the sun shone     Farmland, seaside, estuary, meadow, forest a...
0  I   m not used to starting my day with a press photographer snapping pictures. Par for the course I suppose when you de...
DaiLy BLog post  Scratch that... the rain is back       Feeling better on Day 12 compared to Day 1 or 2     Andy arrives f...
0  The Talyllyn Railway running from Tywyn to Nant Gwernol, just above Abergnolwyn, is popular with visitors to the area. ...
DaiLy BLog post  Long steep slopes      An easy day at last     Andy finds another use for his walking pole     Dan goes f...
0  Andrew   s car struggled to climb the hill we had conquered at the end of the day yesterday, confirming the magnitude o...
known to mountaineers and explorers for its high energy content. By the time we ascended to the ridge above, it was time t...
Daily Blog Post  I think our map is lost in the MUD...     Knee high mud     We break open the first aid kit     Sometimes...
DaiLy BLog post  same trick     this was serious sludge     6 inches deep all across the    footpath   . In places we had ...
0  The weight of the heavy falling rain whipped against my bedroom window, waking me from a deep, comfortable sleep. Joini...
DaiLy BLog post  Rest day privileges      Relocated     Press Release     More Walking on a rest day      Great Evening Ha...
0  According to the Met Office, July in Wales is supposed to be in the top tenth percentile for sunshine throughout the ye...
DaiLy BLog post  We   re not lost, we just don   t know where we are      On the missing list       7 hours 15 minutes    ...
0  While Andrew fastidiously worked out an alternate route, Andy and I secretly applauded Mother Nature   s deliverance of...
DaiLy BLog post  Wash, rinse, repeat...      Lost again     Rain dance   success     Rain, heavy rain     Mist, thick mist...
0  At the beginning of this journey, I was anxious and afraid. I was not the kind of person that took risks     any risks....
DaiLy BLog post  A tale of two valleys      Valley, peak, valley, peak, valley...    nuf said      Wales never looked so b...
0  I wonder if we weren   t too focused on our journey, forgetting to take caution during the remaining sixteen hours of t...
DaiLy BLog post  Breakdown  McAnical not McArdle      It rained... we walked... we got wet... car broke down... we quit   ...
0  It almost seems pointless to check the weather forecast. At some point in the day it IS going to rain. Today looked pro...
DaiLy BLog post  Rest day walk... Royal Welsh Show...Radio Wales      Sunny skies pre-walk     rain during     sunny skies...
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...
DaiLy BLog post  Hallelujah      Sun glorious sun     Mama and babe     Humbled     Cider is the solution     Barnes Walli...
0  Well on our way to Cardiff, the gears were beginning to shift. For me at least, the journey began as a personal one. Bu...
DaiLy BLog post  Flat, dry and over by 3pm     feels like a rest day     7.5 miles along the Wye Valley     Early finish, ...
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 hus...
DaiLy BLog post  Ran 100 miles in 22 hours...      Not any of us, of course      Back to climbing     exhilarating     3 s...
0  Before we even took our first step, we tossed around the idea of doing extra mileage. Three days from now, we were gear...
DaiLy BLog post  Exceeding expectations      Two days in one     Never mind the bullocks      Brecon or bust     Ominous p...
0  Who needs REST     not us  Despite being a proper    rest day    we had an appetite for more. A day without walking now...
DaiLy BLog post  Twin peaks  on a rest day       Alt y Clych, Banc Craigol     rest day madness     Rob joins     Dr. Bria...
0  Spending the past four weeks with Andrew, Dan and Andy has been a tremendous experience. We set out to achieve the most...
DaiLy BLog post  The day before Pen y Fan      The Boar   s Head     A walk in the park     Family arrive The Boar   s Hea...
0  Day  20  40  27 28 July  60  80  Brecon to Taf Fechan Forest Joined by family, friends and colleagues     our large par...
DaiLy BLog post  Done, Done, Done...last BIG climb      Pen y Fan no longer ominous     77 year old leads the way     Rain...
0  Tonight was our last night in Brecon before moving onto a proper hotel in Cardiff. Which meant     the end was upon us....
DaiLy BLog post  After the Lord Mayor   s show...      Long, flat, unchallenging, tarmac...     What have we become    We ...
0  Tomorrow   s walk was slated to be twelve miles long     perhaps too much for Charlton   s first day. With bags packed ...
DaiLy BLog post  More rest day walking      Mayor Dave     Cider Monkey     Chicken Land     Ta    Trail     Gently fallin...
0  Without any challenges along the route to distract us, we were all feeling a tad bit woebegone. Despite our heavy-heart...
DaiLy BLog post  Welcome Charlton      Charlton   s first day     An extra mile     No rain     well a drop or two     Sta...
0  Day  20  40  31  1 August 60  80  Pontypridd to Llandaff Cathedral  The average person takes approximately 2000 steps t...
DaiLy BLog post  So that   s what summer walking feels like         Sun at last     A scenic walk along the Ta        A co...
0  I woke early this morning, wanting to assimilate all that had transpired over the past five weeks. It was hard to belie...
Andy and Stacey get their thoughts on camera.  This last day was, literally, a stroll in the park.  ITV News Wales follows...
Daily Blog Post  Our journey begins...................      The final supper     ITV News Wales     Barely concealed emoti...
DaiLy BLog post  We all needed a little quiet reflection before setting off.  Five triumphant walkers pose for the cameras...
DaiLy BLog post  Well done on completing this huge walk. It was a real pleasure to accompany you on the Builth to Upper Ch...
waLk over waLes  Press coverage A small sample of the press coverage we received as we walked over Wales. Most of the pape...
Walk Over Wales  Epilogue to Walk over Wales Given that the prime directive for McArdle Disease is to engage in regular ge...
one step at a time  Moving forward  Development of a course for people with McArdle   s to learn how to exercise safely an...
individuals must be able to achieve    second wind    in order to fully participate on the walks. Through informal discuss...
the courses  better plan for future sessions. A recurring theme identified by all who participate is how valuable it is to...
one step at a time  Afterword I am absolutely delighted that Stacey has taken the time to write down her experiences with ...
Inspired by the daily blog of    Walk    over Wales   , at age 64 I travelled across the world for the learning, support a...