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TRAINING SUPPORT

Introduction
Support for physical therapists and personal trainers who are helping people with McArdle disease. Our leaflet “At the gym with McArdle’s” provides an outline for conducting aerobic and strength training with this cohort. For “second-wind” testing, or learning more about the training approach, we have further resources available.
Resources

RESOURCES

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LEAFLET: AT THE GYM WITH MCARDLE’S

1/3rd A4, 6 pages

Billed as a “Briefing for physical therapists”, this leaflet gives a short introduction to McArdle disease and explains why affected people need to keep physically active. It explains how the physical therapist or or other professional can help, and gives guidance on how to approach both aerobic and strength training.  

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12-MINUTE WALK TEST: GUIDELINES 

A4 guidelines plus data log sheet

Guidelines for a very simple treadmill test to identify the “second-wind” phenomenon in people with McArdle disease. This is useful for people who have not been shown this as part of their diagnosis. It helps them to understand the “second-wind” effect and how to safely get into it. The distance walked in the 12 minutes is also useful as a regular assessment of progress in aerobic training. Log sheet also available.

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SCALES FOR PAIN AND EXERTION

A6 charts

These charts serve as a reminder of the scales for perceived pain and exertion. The Pain Scale is used to help ensure that the McArdle person does not push too hard during the 12-Minute Walk Test and any future aerobic training. The Exertion Scale is used in strength training. Can be printed out or displayed on a tablet next to the participant. 

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DETAILED GUIDANCE ON AEROBIC AND STRENGTH TRAINING

A4, 5 pages

This detailed guidance on supporting McArdle people with aerobic and strength training is drawn from Appendix 3 of the Clinical Practice Guidelines for GSD V and GSD VII (McArdle’s and Tarui’s). Download the Appendix or go to the Clinical Practice Guidelines page for the full paper.

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DETAILED EXPLANATION OF “SECOND- WIND”

US Royal, 52 pages

The booklet “Living with McArdle Disease” contains a section of 3 pages (14-17) giving a detailed explanation of the “second-wind” phenomenon in McArdle disease. (The booklet also contains much other advice for people with McArdle’s.)

Background

BACKGROUND

There are many other resources available for people with McArdle’s. Please explore the “Resources” menu of this website for details of publications, videos and presentations. Also, on the “Medical” menu you will find the detailed Clinical Practice Guidelines for the diagnosis and management of McArdle’s.
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EXERCISE VIDEOS

Exercise videos
Here are a few videos which give a good introduction to why exercise is so important for people with McArdle’s. Then there is a video of how to undertake the 12 minute walk test.
THE IMPORTANCE OF EXERCISE

13 minutes

 

A presentation by Dr Richard Godfrey, Exercise Physiologist with the UK McArdle Disease clinic in London, and Senior Lecturer at Brunel University. “The importance of exercise and how to do it safely with McArdle’s.”

We have this and many more videos on our YouTube channel.

BASIC STRENGTH TRAINING

2 minutes

 

A presentation from the Euromac Registry by Dr Alfredo Santalla, Associate Professor of Exercise Physiology , Sports Science Faculty, Pablo de Olavide University, Spain. “Basic strength training for McArdle people.”

DEMONSTRATION OF THE 12MWT

8 minutes

 

Andy Williams, one of the fitter people with McArdle’s, demonstrates his home-based implementation of the 12-Minute Walk Test. It shows him achieving “second-wind” and assesses his aerobic fitness. He covers 1100m in 12 minutes. Whilst not a typical result, it does illustrate the approach.

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