Once a diagnosis of McArdle disease has been confirmed by an expert, it is highly beneficial to come to an acceptance and refocus on just how manageable life can be with this condition.
To achieve a positive state of mind, the first thing is to get the correct guidance on activity and exercise, so that we achieve and maintain the best level of fitness that we can. Activity in itself will lift the mood through the production of endorphins, giving a feeling of achievement and improving our self-image.
It can be frustrating to need to change the way we live our life. When life is already so busy, change can feel like a burden. But as we start to manage it, the benefit can multiply and in due course the burden is lifted.
Most people with McArdle disease can learn to manage well with this condition, overcome the psychological challenges and have a positive outlook on life.
The aim of this page is to highlight the things which we can do to enhance our mood and improve our state of mind.
There is a big spectrum of degrees to which we are all affected. However, we offer here a wide range of tips for mental well-being. Everyone should be able to pick out at least a few tips which could work for them, so that they can develop a positive attitude to living with McArdle disease.
ACCEPTING THE DIAGNOSIS
IT COULD HAVE BEEN A LOT WORSE!
If we are unlucky enough to have a muscle disease, then McArdle’s is one of the best to have! There are very many muscle diseases, such as the muscular dystrophies, and many can be debilitating, progressive and life-limiting. By comparison, we are fortunate that McArdle disease is relatively benign and is not progressive or life threatening. To look after ourselves we should take plenty of aerobic exercise, have a healthy diet and keep our weight under control – all of which we should do anyway for general good health.
FOCUS ON WHAT WE CAN DO
It is amazing just how much we can do, considering that 80% of the body’s store of carbohydrate energy is not available to us. Once we are in “second wind” we can do most aerobic activity, if at times at a bit slower pace than other people. Even intense anaerobic activity we can do in short bursts of around 6 seconds at a time, so tasks like that need to be broken down into small sections.
THE DIAGNOSIS CAN BE PART OF WHO WE ARE
McArdle people tend to like a challenge. Without our McArdle’s we would be different in character and personality. It makes us good at planning ahead, we are more adaptable and we have “stickability”. McArdle’s is part of who we are as individuals.
An understanding group on a McArdle’s walking course.
CREATING A SUPPORT SYSTEM
FINDING PEOPLE WHO UNDERSTAND
There is a great deal of information available once we find a patient support group, such as IamGSD. We can benefit from the years of experience of the many who have been diagnosed before us. For the first time in our lives we can meet other people with McArdle disease - people who know what we deal with every day, who understand. Our stories are remarkably similar. We might even book on a walking course, where we are surrounded by our McArdle peers, 24/7.
OUR FRIENDS SUPPORT US
When we tell our friends about our McArdle’s there is almost always a positive response. There is a useful IamGSD “At Home” leaflet for doing just that, and even some helpful videos on the IamGSD YouTube channel. Once friends understand they usually want to be supportive, are happy to go slow or take a break without even mentioning it. They will even watch out for us making mistakes and step in – such as stopping us lifting or carrying something that they can see is really too heavy for us.
WE GET ON BETTER WITH TEACHERS AND EMPLOYERS
With the help of IamGSD’s leaflet “At School with McArdle’s”, teachers and other school staff can better understand what our needs are. The same applies with employers and the “At Work with McArdle’s” leaflet. It is great to have better understanding, be supported and have adjustments made to enable us to play our full part in the team.
OK, our second wind is not really that fast!
LEARNING ABOUT MCARDLE’S
GETTING INTO SECOND WIND IS NO LONGER A PROBLEM
As we improve fitness, getting into ”second wind” becomes quite easy. It's a very positive feeling and makes activity so much more achievable and enjoyable. Whereas when we are less aerobically fit it can be a bit of a struggle, maybe taking as long as 10 minutes. The most aerobically fit amongst us can maybe get into “second wind” in just seven minutes, and with less difficulty.
MOST ACTIVITIES CAN BE ADJUSTED
We can adapt and adjust almost any activity to make it safe for us. We may break down tasks into sections, switch between different activities in order to use different muscles, do things in a different way to other people, or simply allow more time. With a bit of imagination we can do almost anything!
ADAPT RATHER THAN AVOID
Before diagnosis we probably avoided activities which we found too difficult or were going to cause pain and cramping. With the diagnosis and an understanding of what the problem is, we can learn ways to adapt activities and can now do much more than we could do before.
Two McArdle people getting the big view in the Italian Dolomites.
PUTTING THINGS IN PERSPECTIVE
GETTING THE BIG VIEW
Seeing a big landscape by hill walking or climbing mountains (or seeing a big landscape in some other way, such as at sea) can help to put us and our troubles into perspective. We can realise that our muscle issues are a small part of us, and we in turn are really a very small part of a very big world. There are very many people facing much larger problems.
WE ARE MORE DETERMINED
We tend to be very determined and good employees. Whilst in many ways people with McArdle’s can perform equally with others, quite often we have to try harder or stick at something for longer. For example, when walking up hill we may need to take 3 times as long as others. This tends to make us more determined, some might say even stubborn – not wanting to give in.
WE FIND WE CAN AVOID PAIN
With the diagnosis and good information we can learn how to avoid anything worse than a mild cramping sensation that lasts for no more than a minute. Whilst before diagnosis we can easily hurt ourselves due to not understanding what is going on, or how to manage it. Significant pain becomes very much the exception, rather than the rule. Pain is effectively eliminated from our day-to-day experience. Significant pain only occurs if we make a mistake or get caught out by external factors.
Regular exercise improves our condition and makes us want to do more.
WE HAVE MORE ENERGY AND FEEL LIKE DOING MORE
The more we do the more energy we seem to have, and thus undertaking even more activity is not a problem. In broad terms, the more we do, the better we feel and the more we want to do.
WE GAIN FROM OUR DIAGNOSIS
It is good to concentrate on what we have gained from our diagnosis.
A better understanding of how to manage our activity.
A network of friends worldwide who understand us.
An imperative for exercise, which will benefit our general health as well as our McArdle’s.
The opportunity to help support others as they get diagnosed.
IamGSD leaflets help to explain our condition to teachers and employers.
A SENSE OF ACHIEVEMENT!
We are encouraged when we start to see progress as our aerobic fitness improves. Keeping a log of our exercise helps focus us on the achievement. If we have a treadmill at home, we can do the 12 minute walk test each week – then seeing our distance improve will give us that tangible sense of achievement. We may even want to start challenging ourselves in more ways.
WE CAN GET A BUZZ FROM HELPING OTHERS WITH MCARDLE’S
It can be a great feeling when we are able to pass on the benefit of our experience and knowledge to others – patients and doctors. Being an ultra-rare disease, very few doctors understand McArdle’s, and even fewer have first hand experience of it. This means that people with McArdle’s are in a special position to become very knowledgeable about it, and that enables us to help others.
LIFE IS NOT SO BAD!