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McArdle Disease (GSD5)

Activity & Exercise

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 course, Wales, 2022

Now in its 12th year (though 2 years cancelled due to the Covid pandemic!) we again offer this successful format for another great opportunity to share with other people who have McArdle’s. There is a main course and a Children & Parents event. 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 the page gives a good introduction to the features and benefits of the course.

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.

Dates of the courses

The dates of the courses are:

Main course
Sat 30 July to Sat 6 August 2022

Children & Parents event
Fri 29 July to Tues 2 August 2022

The McArdle’s Experience, Wales, 2022

This year in the Pembrokeshire Coast National Park, South West Wales.

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 opt-out points should you wish to take advantage of them.

Later in the week, subject to weather, there will be an option for a more challenging route. And of course, you always have the option of a rest day.

Andrew, left, explains a point as we rest before a short flight of steps.

The Leader

‘Walking with McArdle’s’ 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, 73, has walked in Wales for many years and knows the area well. On these courses and the “Children & Parents” events he has helped over 100 people from 16 countries and ages 5 to 78.

Gaby and Stacey at Bosherton Lakes.

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.

Sightseeing AND walking! Leaving Tenby for Caldey Island.

“Rest before risk” – the challenge of a stile.

Happy McArdle’s group from 6 countries at Stackpole Quay.

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.

Download PDF of the “Rules of the Road”.

Evening meal at a local pub in Bosherton.

Taking a break and enjoying the view of the coastal cliffs.

The programme

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 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.

Later in the week, maybe we will do a hill walk.

The walks

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 (or there might just be one person with a related muscle GSD). 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 hill walk, weather permitting.

We will decide on each day’s walk to suit the capabilities of the 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 pints may be longer on later walks. We will start with shorter walks and gradually build up during the week.

Plenty of time to chat and swap experiences. 

Our accommodation

We will be staying at the Stackpole Outdoor Learning Centre at Bosherton Lakes, a National Trust property. It is located in large grounds close to a group of beautiful lakes and the coast, with plenty of walks from the door. 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 supporter who will buy the food and organise us in the kitchen. For the evening meals we have a support team who have kindly agreed to cater for us.

Main course
The accommodation is in “Swan” with a selection of single, double and twin rooms sleeping 24 in total, although we will be more like 12. There are private bathing or shower facilities for each room. There is a large fully equipped kitchen, a dining room and a room in which to relax in the evening. 

Children & Parents
The accommodation is in “Shearwater” which sleeps 11 people in seven bedrooms. There are several shared bathrooms. There is a large combined kitchen and dining room with some comfy chairs, so we can all be together when cooking, eating and relaxing. For some evening meals we may join up with the main course in “Swan”.

Read about the accommodation here.

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.

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 Pembrokeshire

You will need to organise your own transport to Pembrokeshire – we can organise collecting you by car from the train or bus station local to Stackpole. If you come by car we will provide directions and there is car parking space in the grounds of the centre.

For international travellers, we will advise you whether we can organise lifts from airports, or we will tell you how to get close to our location by train. 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.

Download a PDF of our suggested kit list.

The cost of the course

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:

Main course
Prices per person:
Sharing a twin bedded room: £290 per person
Single bedded room: £330 per person
Single occupancy in double-bedded room: £350 per person

Children & Parents
The cost of the event this year will be free for affected children, £170 (approx. US $220) per adult, and £90 for unaffected siblings.

Concessions
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.

Crossing one of the Bosherton Lakes, past water lilies.

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.

Download a PDF of testimonials from course participants.

Watch a short video of testimonials.

One of the closest beaches, Barafundle Bay.

For 2022 the course is in the Pembrokeshire Coast National Park, away from the mountains which you will see in our course video made in Snowdonia. 

BOOKING YOUR PLACE

Places will be allocated on a first come first served basis.

Book now

Click here for our on-line booking form.

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.