15-17 June 2017.
Walking with McArdle's course,
2-9 August 2017.
AGSD-UK Annual Conference,
28-29 October 2017.
There are dangers for McArdle people in walking with others who do not have the condition. It is therefore a good idea to brief your unaffected walking partners as to what to expect and how to respond. Suggest that they read this page, or just tell them the key points as set out at the end.
“Can I help?”
You certainly can! It is highly beneficial for people with McArdle Disease to have plenty of aerobic exercise such as walking. Yet for them the start of exercise is difficult and has to be carefully managed to avoid pain. You can help them by encouraging them to exercise, preferably for at least 45 minutes at a time, at least five times per week. Calm, patient and unfussed support whenever you can will encourage them a lot.
“You can't be tired already, we've only just started.”
The first minutes of a walk are the most difficult for people with McArdle's, so you need some patience to put up with a slow start and probably some short rests of 30 seconds or a minute. They need to be very slow and careful with their McArdle's symptoms in the first 10 minutes, then they should get into “second wind” and it gets a bit easier after that. In fact their symptoms can get even easier during the day. But of course they then get normal tiredness, just like anyone else.
“This is boring, can't we start off up that hill?”
Even starting off on the flat can be a challenge for McArdle people. Starting off up hill is madness, unless they are very fit and aerobically conditioned and are extremely careful. It is best to plan any walk to start on the flat for about a mile, so there is a good opportunity to get into “second wind” before tackling an incline. That will make it easier and safer.
“Are you OK? Do you want to sit down? Shall we turn back?”
Often, when a McArdle person stops for a rest it will be just for a few seconds. There is no need to make a fuss, or even comment as that just draws attention to the fact that they are holding up others. That in turn is likely to make them feel obliged to set off again before their muscles have recovered sufficiently, or even worse not to stop the next time they need to. So once a McArdle person stops, just stop with them without comment. Carry on the conversation or look at the view. Don't stand in front of them but to one side, so that they can set off again when they are ready without needing to say anything.
“At this rate we won't be finished before dark.”
McArdle people can walk up hills, but their energy supply is compromised so they have to go very slowly - at perhaps a quarter of the speed of a normal walker. Most find a very slow, steady plod is effective but others go a bit quicker and have many short rests. Either way, they can manage hills. On the flat and downhill they are not very different from any other walker. So allow a bit more time, have some patience on the uphill sections and you'll get there in the end.
“Let's press on to that big rock, it will be a good place to stop for a break.”
When someone with McArdle's decides they have to stop, it has to be right then. The sensations can change from being OK to needing to stop within just a few seconds, and once the signals are felt they have to stop. If they stop at the “right” time the rest might just be for a minute, if they push on against pain even for just a few yards they will need a much longer rest and can even get a fixed contracture which will put paid to the rest of the walk.
“Why do you always have to be in front?”
A McArdle person should be allowed to set the pace. If someone else is leading they are almost certain to end up some distance ahead, especially when walking up hill. This puts stress on the McArdle person. Stress = tense muscles = anaerobic activity - which is damaging for McArdle people. When they need a rest they will feel under pressure to keep going. And if the person ahead is out of hearing range, if they do take a rest they will drop even further behind. It is much better to allow the McArdle person to be up at the front, to set the pace and choose the rests.
“Don't go yet, I haven't finished my lunch!”
McArdle people will not want to stop for more than about 20 minutes at a time as beyond that they are at risk of losing their “second wind”. That would mean another session of slow, careful walking, juggling between pain and rests in order to get back into “second wind”. So a long leisurely lunch stop of an hour or so is out. Instead they need several short stops with a small snack at each.
“There's no gain without pain.”
It's a common phrase but for someone with McArdle's it is just plain wrong. For a McArdle person, pushing on against pain will result in a cramp, muscle damage and possibly a fixed contracture with rhabdomyolysis. In severe cases acute renal failure can follow. The phrase may be meant as an encouragement, but it is best left unsaid.
Key points, in summary
Of course, other people can have needs as well and it may be that they will need to take precedence over the McArdle person's needs. But if the rest of the group are normal healthy walkers, then all the points above should apply.
Last reviewed: 29 May 2012.
Association for Glycogen Storage Disease (UK) LimitedRegistered Charity No 1132271