In McArdle disease, building and maintaining a high level of aerobic fitness is essential. Here we introduce key aspects which can help you do just that.
“The McArdle’s Experience” residential courses, Wales, 2024
For 2024, our 14th year of these courses, our location is the Bannau Brycheiniog (Brecon Beacons) National Park in South Wales.
We again offer this successful format for another great opportunity to share with other people who have McArdle’s. There is an Under 21s Course (with one or both parents welcome to join) and the Adult Course, each will have their own programme of learning and walks. You will learn all about the techniques that make the day-to-day management of McArdle’s easier. There will be walks every day to put the learning into practice and to boost your confidence and your aerobic capacity.
The video at the foot of this page gives a good introduction to the features and benefits of the course. It was filmed on one of our courses in Wales.
The bonus is making walking safe and enjoyable. You can do this in a holiday atmosphere, with a friendly and understanding group and in a beautiful location in a National Park.
We will be staying in a converted Friends Meeting House near Hay on Wye.
Dates of the 2024 courses
Under 21s Course
(Age limit will be a little flexible to accommodate affected siblings, etc. Parents welcome.)
Monday 29 July to Monday 5 August.
Arrival from 4pm, departure from 10am.†
Monday 5 to Friday 9 August.
Arrival from 4pm, departure 10am.
† Departure can be flexible as we will be continuing to occupy the accommodation after cleaning/changeover.
The McArdle’s Experience, Wales, 2024
This year to be held in the Bannau Brycheiniog (Brecon Beacons) National Park, South Wales. We last held our courses in this National Park and this accommodation in 2018.
We can help guide you in a supportive and encouraging atmosphere, with no worries about embarrassment or competition. We start with walks at an easy grade with level and downhill walking, each with plenty of pick-up points should you wish to take advantage of a lift back to base in our support car.
Later in the week, subject to weather, there will be an option for one or more challenging routes. And of course, you always have the option of a rest day if you wish.
Andrew, left, explains a point as we rest before a short flight of steps.
The Course Leaders
‘The McArdle’s Experience’ is organised and led by Andrew Wakelin who has McArdle’s himself (two copies of the common R50X mutation) so he knows exactly what you go through. Andrew, 75 in 2024, has walked in Wales for many years and knows the area well. On these courses he has helped around 200 people from 18 countries and ages 5 to 78.
The walk leaders will be Bronte Thomas (Under 21s course) and xxx xxxxx (Adult Course). They too have McArdle’s and are both veterans of several years of the walking courses in Wales.
Start of a walk on an old railway line – nice and level!
What you will gain
We aim to teach you the best techniques for managing your McArdle’s, so that you can gain in confidence.
We will help you to improve your aerobic fitness and reduce the risk of muscle injury. You will gain confidence in managing your need for rests, without embarrassment. You are likely to improve your motivation to undertake regular exercise – with all its well proven physical and mental health benefits.
Past participants have gone home feeling confident that they can exercise safely and with the desire to expand their McArdle’s boundaries, inspired by what they learnt and achieved during the week.
“Rest before risk” – the challenge of a stile.
Happy McArdle’s group from 6 countries.
Rules of the road
We have some simple ‘rules of the road’ for walking in a McArdle’s group. These ensure that everyone is looked after and so we ask all participants to agree to follow them.
Usualy on one evening we have a meal at a local pub.
Plenty of time to chat and swap experiences.
The story of the McArdle’s Experience
This presentation tells the story of the start of the walking courses and what is involved, giving a good flavour of what to expect. It also tells a bit of the history.
A short section of challenging path beside a river.
This is a training course but also with an accent on having fun and enjoying ourselves in a beautiful setting. The walks will be enjoyable in their own right as well as providing the opportunity to compare notes with other people with McArdle’s and gain practical experience of the subjects we cover. There is also plenty of time to swap notes discuss our condition.
We will be running a series of not too formal theory sessions plus there will be plenty of opportunity for sharing and discussions. The programme will include: aerobic versus anaerobic, the aerobic to anaerobic continuum, second wind, rest before risk, the six second rule, 30 for 80, effect of terrain and surface, slow and steady, regular rests, headwinds, best use of walking poles, walking with non-McArdle people, route planning, eating on walks, hypoglycaemia, hydration, zig-zag technique, stepping up, bad pain versus good pain, etc.
It is expected that the course will be visited on one day by a professional from the McArdle’s clinic in London. They will give a talk to the course members.
Later in the week there will be opportunities for mountain walks. Here on Hay Bluff, near our accommodation.
We have an extensive schedule of pre-planned walks available, all geared to the needs of people with McArdle’s. There is no need to feel worried – we select walks to suit the participants and we all have McArdle’s (there might someone with a related muscle GSD, or an understanding partner). There are many choices of wonderful walking. The options range from level walks around lakes, on riversides, along the coast, canal towpaths, old railway lines, and valley walks. For those who wish to go higher and have a greater challenge, there will be options later in the week – on some days we may split into two groups, one for a level walk and one for a harder grade and more committing walk. For those that wish there may be the opportunity do a mountain walk, weather permitting.
We will decide on each day’s walk to suit the capabilities of the individual members of the group, and the weather. Walks are planned to provide (wherever possible) pick-up points along the way, so that if anyone feels they have done enough they can be collected by car. You will be fully briefed before each walk so you know what to expect. The early walks will have frequent pick-up points, sometimes no more than a mile apart, in order that you can be confident to join the walk. The sections between pick-up points may be longer on later walks, and may be impossible on mountain walks. We will start with shorter walks and gradually build up during the week.
The conveted Friends Meeting House and cottage at Penyrwrlodd.
We will be staying at Penyrwrlodd Farm Cottages, near Hay-on-Wye. The old Friends Meeting House and cottage are converted to group accommodation. There is a link below to their website, which has a lot of detail and photos.
This is self-catering accommodation and everyone will join in helping to make breakfasts and packed lunches. Whilst we will all muck in, we have a support team, led by AGSD-UK Trustee Rachel Thomas, who will buy the food and organise us in the kitchen. For the evening meals the support team have kindly agreed to cater for us, but we can offer to help.
The bedrooms and facilities
This is described as group accommodation for up to 17 people. There is a great variety of rooms from doubles and twins up to group rooms for up to 4 people. All rooms are converted to modern standards and with bathrooms either ensuite or close at hand. We will be asking people to share rooms wherever possible.
One of the bedrooms.
Part of the kitchen area.
Who can join in
Anyone with a confirmed diagnosis of McArdle Disease (GSD5) or Tarui Disease (GSD7), wherever in the world you live. We are also happy to consider those with other muscle GSDs, so please get in touch.
Under 21s Course:
There are two categories, both with the same diagnosis details as above. We anticipate having a good group within each of these categories. Activities will normally be as one group, but may sometimes separate to be more appropriate to each group.
Children & Parents: Children under the age of 18 who are required to bring a parent with them.
Young Adults: We are aiming at a group of young people 18 to 21, but do not need to enforce a rigid cut-off age. For example: siblings where one is under 21 and the other is over; or somebody just turned 22. Or perhaps someone just a bit older who has been before and has friends on this year’s course.
Requirement: You should be able to walk on the flat (slowly, at your own pace and with whatever rests you need) for about half a mile (0.75 km). If you are not yet able to do that, we have available some notes on starting an exercise programme and we can help you to get to that level.
Comparing notes on a lakeside walk.
Travel to Hay-on-Wye
You will need to organise your own transport to South Wales – but do please ask for guidance. We can organise collecting you by car from Abergavenny or Hereford train stations (they are each about 45 minutes drive away). If you come by car we will provide directions and there is car parking space at our accommodation.
For international travellers, we will advise you whether we can organise lifts from airports, but most likely we will help you plan your train journey to one of the stations above. Please just get in touch and let us know your requirements.
Check the kit list for walking gear.
What you need to bring
Please note that you will need to have lightweight walking shoes or boots with good grip soles, a waterproof jacket and a pair of telescopic walking poles. We have pairs of walking poles available for loan – please let us know if you require them, or we can give advice about purchase.
Cost of the course (YET TO BE FIXED)
The cost of the course varies for different types of room. We have three different room types available at different prices. Costs below include all accommodation, food and activities during the week. Please indicate your preference on the booking form and we will allocate as best we can:
Prices per person:
Sharing a twin or double bedded room: £xxx per person
Single occupancy room: £xxx per person
Sharing in a multi-occupancy room: £xxx per person
Under 21s Course
The event is free for affected children. Per accompanying adult £xxx, and per unaffected sibling £xxx, all sharing a room.
Concessions are available for those in full time education, unemployed or retired and on a restricted income. We do not want cost to be a barrier to attendance, so please contact us if you wish to discuss what is possible – AGSD-UK has funds allocated to assist.
A walk later in the week, this one over a pass in the mountains.
Testimonials from past course members
Past participants have found that walking with fellow McArdle’s people was a real joy with a lot of laughs and had the benefit of true understanding from fellow walkers, making the walks relaxed, enjoyable, confidence boosting and hugely rewarding. Here, on paper and video, they provide quotes about their experiences.
Below we have a 7-minute video, shot on a course by Dan Chambers, with participants talking about their experiences.
Always time for a rest and to enjoy the view.
This 15 minute video about the course was shot in the Eryri (Snowdonia) National Park.
BOOK YOUR PLACE !
Course places and rooms will be allocated on a first come first served basis.
Once your place is confirmed you will be asked to pay a deposit of £100 or the full amount. If you pay only the deposit the balance will be payable one month before the course.
For all enquiries
For any further information and questions please email the McArdle’s coordinator.