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.
Walking with McArdle’s course, Wales, 2020
We will be back in 2022, as “The McArdle’s Experience”, in Pembrokeshire, subject of course to the Welsh Government’s regulations to protect people in the COVID-19 pandemic. The dates are: Saturday 30 July to Saturday 6 August 2022, with the Children & Parents event overlapping – Friday 29 July to Tuesday 2 August. Watch out for more details.
Now in its tenth year we again offer this successful format for another great opportunity to experience walking with other people who have McArdle’s. But it is not just about walking. You will learn all about the techniques that make the day-to-day management of McArdle’s easier.
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.
Walking course video made on a course in Snowdonia.
Dates of the course
The dates of the course are:
Thursday 6 to Thursday 13 August 2020.
Walking with McArdle’s course, Wales, 2020
This year in the Snowdonia National Park, North 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.
‘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, 71, 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.
A coastal walk on the island of Anglesey.
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 achieved during the week.
Starting a walk on an old railway line – nice and level!
Rest before risk – the “challenge” of a stile on a walk around a lake.
Great views on the “Precipice Walk” high up above the valley.
Descending from a high level walk.
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, 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.
We hope that we will be joined on at least one day by a member of staff from the UK McArdle Clinic.
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.
Later in the week, maybe we will reach a peak.
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 are many choices of wonderful walking. The options range from level walks around lakes, on riversides, 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 will 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) opt-out points along the way, so that if anyone feels not up to completing the walk they can be collected by car. You will be fully briefed before the walk so you know what to expect. The early walks will have frequent opt-out points, sometimes no more than half to 1 mile apart, in order that you can be confident to join the walk. We will start with shorter walks and gradually build up during the week.
Plenty of time to chat and swap experiences.
We will be staying at Bryn Engan Farmhouse, part of the Plas y Brenin centre. 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 will alternate betwen our own catering and eating at the Plas y Brenin main centre.
The accommodation is in single rooms, plus one twin room. All rooms are ensuite.
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 walk.
Travel to Wales
You will need to organise your own transport to Wales – we will organise collecting you from train stations (e.g. Llandudno Junction) or bus stations. If you come by car we will provide directions and there is car parking space in the grounds.
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.
The cost of the course
The basic cost of the course is around UK £300 (approx. US $400) per person to include all accommodation, food, transport and activities during the week. But from that we have varied the price for different types of room. We have three different room types available at different prices. Please indicate your preference on the booking form and we will allocate as best we can:
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
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.
Taking a rest at scenic spot on the Menai Straits in North Wales.
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.
BOOKING YOUR PLACE
Places 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.