The challenge of a lifetime

 A windy start at the Great Orme, Llandudno

I have a rare genetic muscle condition. After four misdiagnoses, I finally got the correct diagnosis at age 30, McArdle disease. It blocks access to energy stored in muscle glycogen – 80% of the body’s carbohydrate. The severe energy crisis can lead to muscle breakdown and renal failure.

Being only the 50th case in the world meant there was little information. The advice was: no sustained activity and no intense activity such as walking uphill. I felt this to be wrong, kept active within my limits and avoided serious episodes. After completing the 188 peaks in Wales over 2,000 feet (600 metres), I needed a new challenge and fixed on walking across Wales, north to south. 

Online I knew Dan Chambers from California in the US and Stacey Reason from Canada. Dan, diagnosed at 12, had to give up all his sports one after another. Now at 18 he needed motivation for the exercise which is essential to manage the disease. I invited them both to join me on my ‘Walk over Wales’. Andy Williams also joined from his home in Singapore, and Charlie Thear, aged 13, travelled from the Canary Islands for the last few days. 

Our route map from our ‘Walk over Wales’ blog

I planned a route of 32 days, including five rest days, and averaged 7.7 miles a day, taking roughly twice as long as other people. We had to allow three to four times as long on uphill sections. With McArdle’s it would be too demanding to carry camping gear and food, so we ended each day at a road for our support driver to collect us, take us to accommodation and deliver us back the next morning.

On 2nd July 2010 we set out from the tip of the Great Orme at Llandudno. For us the first 10 minutes is the most difficult, and there was a headwind to make matters worse. Within 100 yards we were pausing for a rest wondering what on earth we had taken on. But we got our second wind and soon we had a downhill section and then on to the first day’s finish at Conwy Castle. We had walked five miles. Celebrating with an ice cream, it suddenly hit us – we still had 205 miles to go!

High points

Soaked on Pumlumon, day 17, but still ready for more

There were of course many anecdotes from our journey. 

  • Setting off for Snowdon at 2pm to avoid the worst weather. The rain eased, but on the summit there was almost no visibility and the wind was gusting 50mph. We got down to Snowdon Ranger at 9pm. 
  • Opting for a low level route through the Carneddau, due to high winds. 
  • Standing on the cantilever stone on the Glyders. 
  • Frequent claims that we were lost, me insisting we weren’t, I just didn’t know quite where we were! • Being interviewed on BBC Radio Wales. 
  • Another walker not believing us when we said we were headed to Cardiff. 
  • Gently moving a herd of bullocks off the path.
  • Getting my compass out on Cadair Idris to be sure of a safe descent in the mist. 
  • Going so well over the Eppynt that we did two days in one.
  • Having friends and family join us for our last peak, Pen y Fan. 
  • Arriving in Cardiff Bay to be met by ITV News.

The walk succeeded in raising awareness of McArdle’s, with repeated press coverage. We also raised sponsorship of about £14,000 to help the AGSD-UK support group.

Long legacy

The most recent course took place in Pembrokeshire last year with members aged between 18 and 70 from England, Scotland, Wales, Germany, the Netherlands, and the USA.

To share our understanding of McArdle’s, we planned a week-long residential course to help others. 2020 will be our 10th year, people have attended from 17 countries, ages 5 to 78. Italy, Germany and the USA have taken up the concept.

Realising the value of sharing patient experience, we developed a book of “101 Tips”, YouTube videos and more. The medical world now accepts that our problem is intensity, not endurance.

It was a crazy idea - a group of people with a serious muscle disease walking across Wales and climbing umpteen mountains on the way. Yet we did it, and the ripples continue to help improve the lives of around 3000 “McArdle-ites” now diagnosed worldwide.

Andrew Wakelin is a Ramblers life member and volunteers for the AGSD-UK support group as the McArdle Disease (GSD5) Co-ordinator and co-authored One Step at a Time, a book about walking with the condition

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