TIPS FOR A POSITIVE FUTURE
FINDING ALL THE SUPPORT YOU NEED

Friends will be interested and support you once you have explained.

YOUR FRIENDS SUPPORT YOU
  • When you tell your friends about your McArdle’s there is likely to be a positive response.

 

  • There is a useful IamGSD “At Home” leaflet to help you tell them. And videos on YouTube. 

 

  • Once your friends understand, they will better prepared to support you.

 

  • They’ll be happy to go slow, or take a break and not mention it.

 

  • They will watch out for you and step in to help.

 
TIPS FOR A POSITIVE FUTURE
COMING TO ACCEPTANCE

McArdle-ites explain some of how they manage.

YOU FOCUS ON WHAT YOU CAN DO
  • It’s amazing how much you can do, despite 80% of your carbohydrate energy being inaccessible. 

  • Once you are in “second wind” you can do most aerobic activity. 

  • Even if at times you go at a bit slower pace than other people. 

  • You can do intense anaerobic activity in bursts of around 6 seconds.

  • Tasks like that, you simply break down into small sections.

 
TIPS FOR A POSITIVE FUTURE
LEARNING ABOUT MCARDLE’S
SECOND WIND IS NO LONGER A PROBLEM
  • As you improve fitness, getting into “second wind” becomes quite easy. 

  • It’s a very positive feeling and makes activity so much more achievable and enjoyable. 

  • If less aerobically fit, it can be a struggle, maybe taking as long as 10 minutes. 

  • Yet the most aerobically fit amongst us can easily enter “second wind” in under 7 minutes.

OK, second wind is not really THAT fast.

 
TIPS FOR A POSITIVE FUTURE
PUTTING THINGS IN PERSPECTIVE
GETTING THE BIG VIEW
  • Seeing a big landscape by hill walking can help put your troubles into perspective.

  • Or seeing a big landscape in some other way, such as at sea. 

  • You can realise that your muscle issues are a small part of you. 

  • And you in turn are really a very small part of a very big world. 

  • There are very many people facing much larger problems.

McArdle-ites get the big perspective in the Italian Dolomites.

 
TIPS FOR A POSITIVE FUTURE
LOOKING FOWARD TO THE FUTURE

Building activity into your life delivers rewards. 

YOU FEEL LIKE DOING MORE
  • The more you do, the more energy you feel you have.

  • Undertaking even more activity is not a problem, it becomes a virtuous cycle. 

  • In broad terms: 
    – the more you do
    – the better you feel
    – the more you want to do.

What is IamGSD?

We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.

What is Muscle GSD?

Human bodies make glucose from carbohydrates. Excess glucose is stored as glycogen in our muscles and liver. Muscle glycogen storage disease is when our muscles cannot convert their glycogen back into glucose to power our muscles.

Muscle GSDs links
If you have another muscle GSD please contact us.

Site updated: 09/2020.

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