15-17 June 2017.
Walking with McArdle's course,
2-9 August 2017.
AGSD-UK Annual Conference,
28-29 October 2017.
• Stroll before Second
• Pause before Pain
• Embrace our Embarrassment
• Rest before Risk
• Stop after Six
• Shorten our Static
• Avoid the Awkward
• Reduce our Repetitions
• Think before Tasks
• Temper our Tension
• Halve our Hurry
• Eat before Effort
• Aim for Activity
• Extend our Exercise
• Watch our Weight
• Mind our Medications
• Carry our Card
"...an often repeated word, formula, or phrase, often a truism..."
This is a set of phrases which may make it easier for us to remember the things that are important to looking after ourselves. To help us remember them, they all use a matching initial letter for the verb and the “issue” and they all have three words.
Some of these concepts will be very familiar to people with McArdle Disease, but others are perhaps less well known or understood. If you gain some insight on just one subject it will be worthwhile.
For anyone who would like to know more, there is some explanatory detail for each phrase set out below.
(Click on the phrase to scroll down to that section.)
“Second Wind” is an essential building block of McArdle’s exercise. We must go slow and steady in the first 7 or 8 minutes of exercise or activity until we get into what we know as “Second Wind”. Without this we are at greater risk of injury. Read all about second wind here.
Whether in that first phase of activity or well into second wind, it is very easy for us to over exert ourselves and empty our ATP stores. As our muscles run out of energy we feel it - our limbs will get heavy and the muscles will start to cramp up. We must react to those signs before they turn into pain. We must pause to allow the ATP reservoir to refill. If we ever incur pain which lasts for more than a minute after we pause, we have overdone it. Read about the ATP reservoir here.
We all get embarrassed when we have to stop on a slight slope as someone three times our age powers past. Strangers are watching and wondering what’s up with us. We have to get over it! What does it matter anyway? Enjoy the moment – keep them guessing, create a bit of mystery and intrigue. Learn to love it.
We can easily be at the point of exhaustion whilst just walking along on the flat. Or maybe we are in second wind but are going slightly up hill or into a headwind. The ATP reservoir in our muscles (see above) is almost empty. Just at that point we simply can’t make any extra effort. If we are just about to cross the road, we should stand back from the curb, rest for 30 seconds or so before we cross. Alternatively, if we cross without that deliberate rest we can be sure that a car will come around the corner and we won’t be able to get out of the way. Putting the crockery away? Take a rest before lifting the last heavy plates into the top cupboard. Sawing logs? After getting the next log into position take a rest before picking up the chain saw. Rest before risk.
When we do something at maximum effort (like lifting something heavy or sprinting fast to catch a bus) the immediate energy supply in our muscle cells will be exhausted in about 10 seconds. If we carry on we will get a fixed contracture. It is best to avoid these tasks altogether, but sometimes daily life can be very demanding. If we must do something like open a new jam jar, we should count “one thousand, two thousand” etc as we do it. If by six it is not open, we must stop, put it down and rest or do something gentle for 5 minutes by which time the ATP reservoir should have refilled and we can try again. Read more about “The Six Second Rule” here.
Static exercise (also known as isometric exercise) is the worst kind for us. This is when we are expending effort but without the muscle moving. It is an anaerobic activity because the blood flow to the muscle is disrupted whilst the muscle is contracted. Take two examples of using our legs. Whereas walking is not static, standing on a ladder is static. For our arms, in DIY, whereas painting a wall is not static, holding up a ceiling tile whilst someone else fixes it is static. We really need to avoid this type of activity, adapt it, or a least shorten the duration. So in the ladder example, we should use a ladder with steps rather than rungs; put more weight on one leg and then alternate between legs every 10 seconds or so; try to break the job into sections with a rest between each; if we can’t manage with these adaptations then we must get someone else to do the job.
Holding an awkward position can be damaging even if there appears not to be a lot of effort involved. Turning our necks to reverse the car; holding something out at arm’s length, squeezing onto a packed train carriage with our arm awkwardly reaching past someone to grab a handrail; leaning forward to look closely in the mirror to put on make-up. These are examples of activities that will be anaerobic, will start a cramp within seconds and, unless stopped, will cause a fixed contracture within minutes.
Quickly repetitive actions are a problem for us. Getting into second wind beforehand helps. If we can reduce the speed or the number of the repetitions it helps to avoid problems. So if grating cheese – we should do a bit, change hands, do a bit more, take a break and do something else then come back to it in a few minutes. If using a screwdriver, we should do a few turns, take a break, do a few more. Chewing is another problem area; we can't really reduce the number so we just have to take rests mid chew!
We need to think ahead in order to avoid problems. Many tasks of daily living can pose a threat if we don’t think ahead, or at least respond to the sensations in our muscles. Variation is a major help, so we should think through the task in hand and try to break it down into stages so that we can do something different between each stage, using different muscles. (As an example: getting my lawnmower into the boot/trunk of the car to take it for service can cause fixed contractures in my arms. So I first use my arms to open the boot and clear a space. Then I change to using my legs - walking to get the mower and pushing it to the car. I might then take a break or do something else in the garden for 10 minutes. Now I return to the car and lift the mower onto the tailboard. I walk away again because my arms will be almost out of ATP through that lift. Finally, I return and manoeuvre the mower into position in the car.) Most tasks can be adapted or broken down into stages to enable us to do them despite our McArdle’s. If that can't be done safely we must ask for assistance, as otherwise the result can be painful and cumulative muscle damage will be a problem in the long term.
Not temper as in losing your temper, but temper as in softening metal. If our muscles are tense they have to work anaerobically, as the blood supply is greatly restricted. As we cannot make use of the main anaerobic energy pathway we are likely to incur muscle damage with remarkably little physical activity. It is easier said than done, but we should try to avoid getting angry, afraid, losing our temper, getting over excited, getting depressed or facing a very stressful situation. All these things can make our muscles tense and then we are at much greater risk of muscle damage.
Hurrying is one of the major hazards for McArdle people. It could be hurrying for a train, but just as easily it could be hurrying to get dried after a shower or hurrying to get the children to school. When hurrying we are likely to use more energy than is being supplied by our aerobic pathway and thus easily empty our ATP reservoir and get into trouble. As the cramping sensation lags behind the damage we are doing, we may not realise what is happening until we have hurt ourselves. We should plan ahead and allow time. If we find ourselves hurrying, we should ask ourselves ‘does it really matter?’.
Because we can’t use the energy stored in our muscles we are reliant on energy coming to the muscles in the blood supply. Because everyone fasts over night, for around 8 to 12 hours, blood sugar levels are going to be low in the morning. For McArdle people it is more important than ever to have some breakfast to start fuelling our system before we get into activity or exercise. Without some food our symptoms are likely to be worse. A similar situation applies during the day - if we are active all day it is better to have several small snacks than either skip lunch or stop for a long lunch break.
The times that we find it most difficult to achieve second wind is when we have been inactive for a long period. If we can build a bit of activity into our day it will help when the time comes to start more serious activity or exercise. We need to guard against becoming sedentary in our job and in our day to day life, as that will lead to a loss of aerobic capacity and then almost anything we do is painful and damaging.
We need to exercise for about 45 minutes about 5 times each week to build and maintain our aerobic capacity. This will not only make exercise easier and extend our abilities, but will also help to protect us against injury. If we are not used to doing that, we need to build up towards it in gradual stages. There are some notes here to help you get started on an exercise programme.
Being overweight is a significant disadvantage for those of us with McArdle’s. It puts extra stress on the muscles and thus makes our symptoms worse. That in turn leads to us finding it harder to exercise, and lack of exercise makes us lose aerobic capacity making our McArdle’s worse still. And of course lack of exercise makes it harder to keep our weight in check. We need to look up the recommended weight for our height and aim to get close to it and maintain it. There is a chart available here.
We need to be very wary of medications. For example, statins and steroids pose more risk to us than to others and should be avoided or used very cautiously. Before taking ANY medication we need to read the insert and, if the possible side effects include muscle pain or weakness, ask questions of our doctor. Some doctors prescribe medications and supplements which they think will help with McArdle's, but the Cochrane Review has shown there are none yet proven to be effective. We should not take pain medications before activities as they can mask the muscle pain which is the signal to slow down or stop.
Keep the McArdle Disease Information Card handy as it has a reminder of what to consider if we think we may have overdone things. There are pointers as to when we need to seek medical assistance. The card also supports us in seeking assistance, such as at an airport, and is a handy way to explain the condition to anyone who asks. Read about the card here.
This idea has been a long time in gestation. By the time of writing I had spent over 140 man-days living, talking and walking with people who have McArdle Disease. Typical McArdle people, with stories of being severely affected, being hospitalised, being mis-diagnosed, etc. Many practical situations have arisen, many problems have been debated, many subjects have been discussed, many experiences have been fed-in. I think the result is a well-rounded view of the subjects we need to bear in mind. My thanks to all those who participated in the “Walk over Wales” in 2010 and the “Walking with McArdle’s” courses in 2011, and to Terri Chambers and my sister Sally, who all contributed to this work in one way or another.
Prepared by Andrew Wakelin for AGSD-UK
Last reviewed: 13 May 2012.
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