Residential walking courses, typically over 7 days, have proven to be highly effective in assisting those with GSD5 (and have also been proven in several cases of GSD7).
A four-minute testimonial video, recording the thoughts of participants on the walking course in Wales.
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-to-day life with McArdle’s.
Through informal discussion and practical experience, the 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 examples 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 objectives of each of the walking courses are to:
Develop good management of the participant’s McArdle’s.
Improve aerobic fitness.
Teach a range of techniques and approaches to improve performance and minimize 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.
A McArdle group about to set off for the day’s walk.
A conceptual representation helps avoid problems.
“Rest before risk” – navigating a tricky stile.
PEAK PERFORMANCE PYRAMID
The “Peak Performance Pyramid” is used on the course. Diagnosis is confirmed in advance and then the stages of Understanding, Acceptance, Techniques and Aerobic Training are developed on the course. Hopefully, participants then return home with the tools that enable them to continue to progress towards their peak condition.
RULES OF THE ROAD
All the walkers in a McArdle’s walking group need to protect themselves from possible muscle damage. Apart from good techniques, the key to this is a set of rules which we all need to stick to - and we willingly comply, as we all understand.
We always walk at the pace of the slowest person and if someone else stops, we just carry on slowly, unless they are the last person, then we stop with them. We don’t say anything about it.
People in front watch out for those behind so as not to put pressure on them. If the group is spread out we will stop and all catch up. Usually 30 seconds rest is enough though we will also stop frequently for short breaks irrespective of any immediate need, and will have regular pick up points.
WHAT COURSE MEMBERS HAVE SAID...
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
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
I have learnt more about my McArdle’s this week than I did in the previous 30 years from my diagnosis.
Gabi Johann, Germany
...great on all fronts - health wise, fun and meeting McArdle-ites. A memorable moment was a group of children racing past, while being with McArdle’s people made it seem normal to be going at a slow pace!
William O’Neill, Ireland
COURSES AROUND THE WORLD
Read more about the courses. AGSD-UK has run walking courses for well over a decade, IamGSD has run courses in California and Massachusetts, the German group SHG runs courses in Germany and a few courses have been run in Italy.
There are plans for many more.
WALES, UK, 2010 TO DATE
A 16-minute video all about the fun and benefit of a walking course
AGSD-UK devised the walking courses for people with McArdle’s and Tarui’s. It originated in the awareness-raising and fund-raising “Walk over Wales” in 2010, with the first course run in 2011 and every year since except two years of the Covid-19 pandemic, sometimes two courses in the year. Although called walking courses they in fact are so much more – including management techniques for daily living and comradeship.
Watch our two videos to get a feel for what a course is like.
• Wales, main course
• Children & Parents event
Main course: July 28 to Aug 4
Children & Parents: July 28 to Aug 1
UNITED STATES OF AMERICA
A video interview about the course with Jeremy Michelson
IamGSD board member Jeremy Michelson organized our first walking course in the US. It was held in Northern California. A total of 20 people attended, from age 15 to age 78, with the muscle glycogen disorders McArdle’s and Tarui’s, and a cross section from those who had very recent hospitalizations with rhabdomyolysis to those who were “hill fit”.
It was an international course - people came from USA, Canada and the UK. Walks were in the giant redwood forests and on the coast, culminating on the last day in a climb of 700 feet. Amongst the participants were the parents of the young people attending, and this was a great opportunity for them to compare notes.
We held a mini course for one day following the AGSD US conference in Houston, Texas, in September 2019.
Watch out for details of future courses in the US.
Alfred Ziegler’s presentation on the walking course in Bavaria, 2019.
IamGSD supported SHG, the German GSD association, in running their first ever walking course in September 2019 in Ofterschwang.
SHG were planning further courses for 2020 and 2021, at the same location, but the COVID-19 pandemic put a stop to them. They were back in action from 2022 onwards.