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AGSD-UK initiative spreads across the world.

Walking course extends to Germany

This week the SHG support group in Germany is running their first walking course for people with McArdle disease, GSD5. This is organised by people who have attended the AGSD-UK walking course in past years, and is supported by our McArdle coordinator, Andrew Wakelin.

The course follows two years where Andrew has run a two-hour mini walking course as part of the SHG’s annual conference.

Concept started in 2011

It was in 2011 that AGSD-UK initiated the concept of a week long, residential course for people with McArdle disease. Two courses were run that year, both in North Wales, and people came from England, Scotland, Wales, Ireland, the USA, Canada, Singapore and Australia.

Immediate success

It was immediately clear that the format was hugely successful. Based in self catering accommodation, the participants lived together, socialised together, learned together, walked together and most importantly laughed together.

It was “total immersion” in how to live with their McArdle disease.

The course format

The course involves tutorial sessions, detailed route planning, careful assessment of how each participant is getting on, an understanding and supportive environment, and regular points where people can opt out of the walk if they feel they have done enough or that it is getting too challenging for them.

A first year experience, at age 64

That first year Lorraine Baguley came all the way from Australia at the age of 64. She had been diagnosed about four years previously. Using what she had learnt by following the blog of the “Walk over Wales” in 2010, she had managed to walk rather more than a mile on the flat. She came thinking that she would like to meet everybody and learn all that she could, but that she would not be able to join in the walks. It transpired that Lorraine felt happy to walk on five out of the six days, and on her last day she walked over 6 miles with an ascent of 1,400 feet.

“I am leaving the course with a new understanding of my body. I will keep healthy and active because now I know I can.” Lorraine Baguley

Participants from 17 countries, ages 11 to 74

Over the nine years of the courses people have attended from a total of 17 countries, with ages from 11 to 74, and abilities from just being able to get into second wind through to those who ended the week climbing a 3,000 feet peak.

In 2016 we added an annual “Children & Parents” event to specifically address the somewhat different needs of diagnosed children. That brought the youngest age down to just 5 years old.

Additional “challenge” events

We have twice offered “challenge” events for those who had already completed a course and wished to extend their boundaries further.

In 2013 a group walked for seven continuous days in the Italian Dolomites, saying at the end that it was the toughest thing they had ever done, both physically and psychologically. In 2016 a group took on the challenge of climbing the 15 peaks in Wales over 3,000 feet. Despite being hampered by extremely bad weather they managed to summit 9 of the 15 peaks, clocking up over 60 “person-peaks”.

Courses in four countries so far

Over the years the UK courses have been run in the National Parks of Snowdonia, the Brecon Beacons and Pembrokeshire. Overseas courses have been held in Italy, California USA, and now in 2019 in Germany. IamGSD is planning to hold a course on the east coast of the US in 2020.

AGSD-UK is pleased to have shared its expertise in this area and hopes that the initiative will extend to more countries in the future.

Watch our video on the walking courses.

Main photo: A walk around Llyn Dinas on the first ever course, Lorraine about to tackle a style as the group learns to “rest before risk”. 

Click on a thumbnail to enlarge, then click to scroll through our photos.