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McArdle Disease (GSD5)

Activity & Exercise

It is vital to keep active in everyday life and take regular aerobic exercise. We offer opportunities to learn practical techniques in an understanding and supportive atmosphere.

Walking with McArdle’s course, Wales, 2019

Now in its ninth 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.

Please watch our walking course video, which will explain a lot! For 2019 we are not in the mountains.

Walking course video in Snowdonia. This year we are away from the mountains.

Dates of the course

The dates of the course are:
Friday 19 to Friday 26 July 2019.

Walking with McArdle’s course, Wales, 2019

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, 70, 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.

Great cliff views on a coastal walk. 

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.

Weather permitting we may take a boat trip from Tenby harbour to Caldey Island.

We hope to visit ”The Green Bridge of Wales”.

The lakes just next to the centre.

Barafundle Bay, on the NT estate we are at.

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, 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.

Download PDF of the “Rules of the Road”.

On the Stackpole estate. Don’t worry, that is not one of us running!

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. 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 opt-out points no more than 1 to 2 miles 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.

Otters on the Bosherton Lakes lily ponds. 

Our accommodation

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 external caterers coming in.

This will be our third time in the Pembrokeshire Coast National Park and our base is near the town of Pembroke. Stackpole is a National Trust centre. The accommodation is mainly twin rooms with some single and some double. All rooms are ensuite and the Swan building we are in is described as of “hotel standard”.

Details and photos of “Swan” at the Natonal Trust Stackpole Centre, where we will be staying.

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, 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. Pembroke or Pembroke Dock) 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.

Download a PDF of our suggested kit list.

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. (Though this one is in North Wales not Pembrokeshire.)

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.

BOOKING YOUR PLACE

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

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.