15-17 June 2017.
Walking with McArdle's course,
2-9 August 2017.
AGSD-UK Annual Conference,
28-29 October 2017.
Another great opportunity to experience walking with other people who have McArdle Disease, to learn from others with the disease all about the techniques which make walking safe and enjoyable. You can do this in a holiday atmosphere, with a friendly and understanding group and in the beautiful Pembrokeshire Coast National Park in south west Wales.
Watch our film made on the 2014 course - click here for our Youtube channel. The film was made amongst the mountains of Snowdonia, but for 2016 we are away from the mountains in the Pembrokeshire Coast National Park in south Wales.
We were at this location in Pembrokeshire in 2012. You can watch our videos from that course on Youtube here, and see our album of photos from the Pembrokeshire (and Snowdonia) courses on Facebook here.
This will be our 6th year and we usually have McArdle people come from around the world at all levels of fitness. We can help guide you in an understanding, supportive and encouraging atmosphere, with no worries about embarrassment or competition.
‘Walking with McArdle’s’ is organised and led by Andrew Wakelin. Andrew has McArdle’s himself (two copies of the common R50X mutation) so he knows exactly what you go through. Andrew, 66, has walked in Wales for many years and knows the area well. He is the AGSD-UK McArdle’s Co-ordinator.
What you will gain
We have set out here hints and tips which we shared with others on previous walking courses. 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. Also, having plenty of time to discuss the condition was a blessing. We hope you will join us and feel the same.
We aim to teach you the best techniques for walking with 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.
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.
We will be running a series of not too formal theory sessions plus there will be plenty of opportunity for discussions. The programme will include: aerobic versus anaerobic, the aerobic to anaerobic continuum, second wind, the six second rule, 30 for 80, starting on the flat, effect of terrain and surface, slow and steady, regular rests, headwinds, benefit of walking poles, correct 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 the UK McArdle Clinic.
Rules of the road
We have some simple 'rules of the road' here 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.
We will 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 plan walks to suit the participants and we all have McArdle's. Our location gives us many choices of wonderful walking. The options range from level walks around lakes, valley walks and coastal walks. We have prepared information on walks we will most likely undertake, you can download the Pembrokeshire walks data sheet here.
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 at the outset of the walk so you know what to expect. The early walks will have opt-out points no more than 1 to 2 miles apart, so you can be confident to join the walk. We will start with shorter, level walks and gradually build up during the week.
The week is designed for the newcomers to walking with plenty of level walks around lakes and estuaries, and coastal walking on cliff tops and beaches. (See links to a photos below.) Any inclines will be relatively short and never more than about 100 feet of height gain. Walks will always have opt out points for a lift in the support car. For those who would like to, before the end of the week there will be an opportunity to undertake a hill walk (subject to weather conditions).
We will be staying in self-catering accommodation and everyone will join in helping to make breakfasts and packed lunches. We will prepare some evening meals and on other evenings will eat out at local pubs or restaurants. Whilst we will all muck in, we have a supporter who will plan menus, buy the food and organise us in the kitchen.
We will stay at the Stackpole Centre at Bosherton Lakes, on the south coast of the Pembrokeshire Coast National Park. Our accommodation is part of a large centre owned and operated by the National Trust. We will be in the Shearwater Wing and the sleeping accommodation is in mainly twin and triple rooms. Details and photos of the Stackpole Centre and surrounding area are available as a PDF click here. For the Stackpole web page on the National Trust site (our place is just part of this) click here.
Who can join in
Anyone with a confirmed diagnosis of McArdle disease, wherever in the world you live. In order to fully participate in the opportunity you will need to be able to achieve 'Second Wind'. If you are not yet able to do that, we have available some notes on Second Wind and on starting an exercise programme which should help you to get to that level.
The cost of each course will be £290 GB Sterling (approx. $430 US) per person to include all accommodation, food, transport and activities for the week. This is based on a group of approx. 12 people. Concessions available for those in full time education (half price), unemployed, retired, etc. If a young person wishes to come and be accompanied by a non-McArdle parent, we can arrange that. Please contact us for details of this and concessions.
Travel to Wales
You will need to organise your own transport to Wales - we will organise collecting you from train or bus stations. Pembroke is the nearest main line train station. If you come by car there is a car park available and we will car-share with 3 or 4 cars during the week. For international travellers, we will advise you whether we can organise lifts from airports, or we will tell you how to get closer to our location by train. Please just get in touch and let us know your requirements.
What you need to bring
Please note that you will need to have lightweight walking shoes or with good grip soles, a waterproof jacket and a pair of telescopic walking poles. We have 5 sets of walking poles available for loan - please ask. We have prepared a suggested kit list available here.
BOOKING YOUR PLACE
Places will be allocated on a first come first served basis. Please use our on-line booking form here. 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 any further information and questions please email Andrew Wakelin on firstname.lastname@example.org
All the links you need, and more, in one place:
Association for Glycogen Storage Disease (UK) LimitedRegistered Charity No 1132271