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 AGSD-UK Conference,
 Wyboston Lakes Executive Centre,  Bedfordshire. 
 20-21 October 2018


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 Whitemoor Lakes

 Lichfield, Staffs.

 28-30 September 2018



Walking with McArdle's - hints and tips

These notes were prepared by the Walk over Wales team as general information. Please remember to read the AGSD-UK legal disclaimer page.

Whilst there is much that is still not known about McArdle Disease, one thing is very clear. Through regular aerobic exercise we can boost the aerobic capacity of our muscles and can then achieve incredible things, mountain walking included. The following techniques will help you to overcome the barriers put in your way by McArdle Disease.

Slow and steady
This has to be our motto! Slow and steady to get into second wind, slow and steady up the hills. Much better to keep at a pace which we can sustain than push ahead, feel the muscles starting to cramp, the heart starting to race and have to stop for a short break and start again. On up-hill sections we progress at about 1/4 of the rate of 'normal' walkers. On the flat and down-hill we are almost the same, as long as we are in second wind.
We have to know our limits and ensure we stay within them. Starting too quickly and over exuberance can both lead to problems. 'Slow and steady' is the motto.

Get into second wind - start on the flat
Whereas walkers might normally drive to the foot of the mountain and set off up, we need to find a car park about a mile away. We need to walk on the flat for about 15 minutes, preferably longer, to make sure we are well into second wind and our cardiovascular system is working well long before we encounter an incline. It is not always possible but it should be the aim. If we can't plan such a route then we must take extraordinary care to walk slowly, with frequent stops, until we get into second wind. With care, this can be achieved on lesser inclines but not on steep inclines. So NEVER set off straight up a steep hill. If there is no choice then you MUST get into second wind elsewhere and then drive to the bottom of the climb. That drive cannot be more than about 20 minutes or you are at risk of losing the second wind before you start climbing. Video on YouTube.

Build awareness
The more that someone with McArdle's walks the more familiar they will be with the sensations in their muscles and their heart rate response. Thus the more they will understand about how to manage their condition. Eventually this becomes an almost unconscious task.

Feeling exhausted
Sometimes even after you have achieved second wind you can feel exhausted and find that you can only take say 10 or 20 paces before having to stop again for 20 seconds or so. This keeps happening and it doesn't seem to get any better. This can happen if you are walking at close to the limit of your aerobic capacity, you are using up your immediate ATP* and it is not having time to recharge aerobically. (This may be what some people describe as having a "bad day" in terms of their McArdle's.) But don't give up, it is just time for a longer stop. If possible, sit down so that your legs are full rested and have something to eat - preferably not refined sugar but something like a banana or a cereal bar. Take perhaps 5 or 10 minutes and then start again slowly. You should now find it possible to keep going steadily without the feeling of exhaustion and those too-frequent rests. This is because your immediate ATP has had time to recharge and as long as you push your pace ahead of your aerobic capacity you should be fine from now on.
*ATP is pretty much the last step in creating energy and you have some available in the muscle. Normally it can be recharged aerobically or anaerobically, but in McArdle's only aerobically.


Use walking poles
Many walkers find walking poles very helpful, and they are especially so in McArdle's. Using two walking poles eases some of the demands on the leg muscles particularly uphill, thus helping to keep you in the aerobic phase. They also help reduce the resistance load on the muscles when going downhill, and give confidence and stability on difficult terrain.
Telescopic aluminium walking poles are very light weight and comfortable to use. Having someone show you the correct use of them is very helpful. Using poles to get your arms into second wind and sustain exercise in that phase should help to avoid the upper-body muscle wasting which appears to be more prevalent amongst McArdle patients than the rest of the population. Video on YouTube.

Choose a good backpack
Choose a backpack with a waist strap and maybe a chest strap. Then load it correctly and you will take most of the weight on your hips thus reducing the stress on your muscles and enhancing stability. An unstable pack can cause you to make an anaerobic movement to counter the pack's instability.

Stop as soon as you need to
Due to the fact that the pain lags behind the damage we are doing to our muscles, we need to become very attuned to the signals which we get. With practice it becomes second nature to adjust to the signals and avoid damage. We have to obey the signals. For instance, if we are on a steep slope and our muscles tell us that we have to stop, it is no good thinking "I'll just get to that next rock". We have to stop immediately. Just a few seconds past the stop signal and damage is caused which can last all day or longer.

Slow down on starting an incline
When an incline is started the demand on the muscles is increased. If you were already walking at your maximum aerobic capacity you are going to have to slow down to avoid your muscles trying to go anaerobic. It is good to make a conscious decision to slow your pace just before the incline starts. If you don't do that you may find the muscles tightening up and must respond to that by slowing down or stopping for a short rest.
Another factor in changing to a steeper incline is that you may then be using slightly different muscles which are not in second wind. You have to take the usual care to get those new muscles into second wind.
If you haven't been using your walking poles on the flat, now is a good time to get them out of your pack and put them to use on the slope. (Better still to use them on the flat first to get your arms into second wind.)


Steep slopes - zig-zag or contour
It is impossible to get up very steep slopes aerobically, no matter how well trained our muscles are. The most useful technique to assist is to 'zig-zag' back and forth across your route. That way you can reduce a slope of say 1 in 3 to say 1 in 6 or even lower if you zig-zag more. You can thus keep within your aerobic capacity. You can use this even on a road or lane - each 'leg' of the zig-zag may be only half a dozen paces, but it still works. Watch out for cars! If the width of the slope allows it you can take a long gently ascending traverse rather than zig-zagging. Video on Facebook.

Stepping up in small steps
On very steep paths and on rock-strewn open terrain there can be high steps to negotiate, which others will manage with no great bother. Each step involves lifting our own body weight vertically for the height of the step, and this is bound to be anaerobic. With McArdle's we need to try to avoid these steps and walk on a graded slope. If this can't be done we need to seek out interim places to put our feet, maybe at the side of the path, so that we lift our weight the same distance in two lifts rather than one. This helps us to keep the activity as aerobic as possible. Video on YouTube.
Sometimes on steep slopes slowing the pace and using the above techniques still leaves you working too hard to be fully aerobic. You may still need to take plenty of short rests.

Environmental factors
With McArdle's we are more affected by environmental factors, so we need to be sensitive to them. A headwind can turn your normal aerobic pace into something anaerobic. Surfaces such as soft ground, mud and long grass can demand quite a lot more energy. Extremes of temperature can affect muscle performance. We need to be sensitive to these factors and adapt our activity, alter our route or slow our pace accordingly.

Avoid long breaks
Our second wind tends to be lost in about 30 minutes. Therefore it is best to play safe and avoid stops of more than say 15 minutes or so. While walking with non-McArdle's people this is a clash of style. You need to stick to your shorter breaks and explain to the others why this is. If the terrain is safe, you might agree to start off before the others and let them catch you up.

Rest before the top
Many hill walkers will want to get to the top and then take a long break, say for lunch. With McArdle's we instead need lots of little stops on the way up. If there is going to be any more ascent on the route, we need to quickly pass over the top so that we can get to the next ascent before we lose our second wind in our up-hill muscles. If a longer stop is required, best to take it before the top so that we can boost our up-hill muscles again in that last section. In this way we can minimise the time between up-hill sections and thus reduce the risk of losing second wind in our up-hill muscles.


Be up-front about your condition
Walking with others who have McArdle's is a dream compared to walking with people who do not have it. Don't be shy about telling your fellow walkers about your McArdle's. Much better to explain over a pint in the pub the night before, than start explaining when you are on the walk. Walkers will tend to be people who are interested in exercise and they will be fascinated by your story. People will not fully understand, but they will understand that it is a serious issue and they will be happy to make allowances for you. You then will not feel under pressure to push yourself beyond your limits and thus will avoid damage.

With regular walking every day you will improve your capacity. Stops will be less frequent and hills will seem easier. You may also find that getting into second wind become a bit easier, although it will always take about 10 minutes or more.

Eating and hydration for walking
On a big walk day you may need to consume more calories than you normally do, but otherwise should be eating a healthy balanced diet. Some people find that sugar before starting seems to help them get going, although others find it not necessary. Regular high sugar consumption must be avoided as it will lead to weight gain as you are very unlikely to burn off all the calories. Because we need to avoid long breaks (see above) we should eat little and often rather than eating all our lunch in one go and then needing to wait for it to be digested before getting moving again.
Drinking enough fluid is very important, especially in hot weather. Dehydration can lead to muscle damage, so whilst hydration is important for anyone it is extra important for us.

Avoid tense muscles
Fear or panic (or even over-excitement) can cause the muscles to be tense. In that state almost anything you do will be at least partly anaerobic and thus lead to muscle damage. Know your limits and plan your route to avoid situations which will cause you to be tense.