15-17 June 2017.
Walking with McArdle's course,
2-9 August 2017.
AGSD-UK Annual Conference,
28-29 October 2017.
Many thanks to Wholebake Ltd for kindly sponsoring us with healthy energy bars, handmade in Wales, for our two weeks. 18% protein, 29% carbohydrate. www.9-bar.co.uk.
The courses were a great success - please read the responses of the participants - see link below. And watch out for announcements about 2012.
This is an 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 a beautiful part of the world - the Snowdonia National Park, North Wales.
I am getting excited. I can't wait to be among people who know what it is like to live with McArdle's. It is like a dream coming true.
Lorraine Baguley, Australia
It truly is a beautiful spot for a base.
Cheryl Ellis, UK
We have McArdle people coming from England, Scotland, Wales, Ireland, USA, Canada, Australia, Spain (Canary Islands), Singapore and The Netherlands.
The organising team
The organisers of 'Walking with McArdle's' are the people who undertook the 'Walk over Wales' in July 2010. (Photo, left to right - Andrew Wakelin, Dan Chambers, Stacey Reason, and Andy Williams. Charlton Thear who joined the last 3 days of WoW is also coming in 2011.) You can read about WoW here. All the Team have McArdle Disease themselves and have been severely affected in the past. Having set off to join WoW very unsure of their abilities and not liking hills, they found the experience of walking as a McArdle's group enjoyable, confidence boosting and hugely rewarding.
We have set out here hints and tips which we tried or experienced on the Walk over Wales and which we would like to share with others. Walking with fellow McArdle's people was a real joy with a lot of laughs and gave us the benefit of true understanding. To have plenty of time to discuss the condition was a blessing. We hope you will feel the same about the week's walking in 2011.
The Team will be led by Andrew Wakelin, age 62, who has walked in Wales for many years and knows the area pretty well. Andrew is the AGSD-UK's Type V Coordinator.
What you will gain
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 it's well proven physical and mental health benefits. We hope you will go home feeling confident that you can exercise safely and with the desire to expand your McArdle's boundaries, inspired by what you have achieved in Wales.
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' and to walk on the flat for at least 2 to 3 miles (3 to 5 km). If you are not yet able to do that, we have available some notes on starting an exercise programme which should help you to get to that level.
This will primarily be a walking holiday with the 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 relatively informal theory sessions plus there will be plenty of opportunity for discussions. The programme will include: aerobic V anaerobic, the aerobic to anaerobic continuum, second wind, the 6 second rule, 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. John Buckley, the exercise physiologist working with the UK McArdle Clinic, is planning to join us for a few days as are other medical professionals.
Our location in the centre of Snowdonia gives us many choices of wonderful walking. The options range from level walks around lakes, valley walks, coastal walks, and a full range of hill walks from very gentle to strenuous mountain walks. We will have an extensive schedule of pre-planned walks available, all geared to the needs of people with McArdle's. We have some simple 'rules of the road' here for walking in a McArdle's group. We ask everyone to sign up to these as they help to look after us all.
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. The early walks will have opt-out points no more than 2 to 3 miles apart, so you can be confident to join the walk. We will start with shorter, level walks and gradually build up both length and ascent during the week. None will be longer than 9 miles. On some days, depending on the capabilities of the group, we may split into two parties and undertake two walks of differing grades. For those who would like to, at the end of the week there will be an opportunity to undertake a serious mountain walk (subject to weather conditions).
We will stay at the Craflwyn Basecamp, in the Gwynant valley near Beddgelert in the Snowdonia National Park. The base is on the Craflwyn Estate which is owned and managed by the National Trust - a charity which protects large parts of Britain's natural heritage and historic places. The base is part of a range of stone buildings next door to the Craflwyn Hall and has been converted for the purpose. It offers all the facilities we need. Click here for the Craflwyn website.
We will be staying at the base on a self-catering basis 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. The sleeping accommodation is in male/female segrated bunk rooms/sleeping areas - please see the photo gallery for our own detailed photos of the base.
We will work on a cost-share basis between all those on the course - we are planning on a group of 12, with the possibility of running a second week if there is demand. (We need a support driver who will not be committed to the full walks - so let us know if you fancy joining the group on that basis.) You should budget for a total of approx £250 (GB Sterling) to cover the accommodation, breakfast and lunch, evening meal, transport during the week - shared cost for petrol etc, and a few incidental costs.
Travel to Snowdonia
You will need to organise your own transport to Snowdonia - we will organise collecting you from train or bus stations. Bangor and Llandudno Junction are the nearest main line train stations. If you come by car there is a car park and we will car-share just 3 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 Snowdonia by train. Please get in touch and let us know your requirements.
What you need to bring
Please note that you will need to have lightweight walking boots with good grip soles, a waterproof jacket and a pair of telescopic walking poles. We will give you a complete kit list in due course.
Due to the level of demand we have decided to run two weeks so that we can double the capacity. The dates of the two weeks are:
Friday 22nd to Friday 29th July 2011
Monday 1st to Monday 8th August 2011
Booking your place
The accommodation is booked and places will be allocated on a first come first served basis. A booking form will then be sent to you to be returned with a deposit of £50. If we get oversubscribed we will have a waiting list for cancellation places.
To register your interest in attending, or for further information, please email Andrew Wakelin at firstname.lastname@example.org
Links of more general interest
Association for Glycogen Storage Disease (UK) LimitedRegistered Charity No 1132271