ENCOURAGING REGULAR PHYSICAL ACTIVITY
Individuals with McArdle disease experience varying degrees of symptoms, ranging from mild physical activity intolerance to severely limited physical activity intolerance with fixed muscle weakness.
Physically active individuals are much more likely to reduce their intolerance and ultimately the clinical course of the disease. However, in order to achieve this, patients must have access to proper clinical management.
Getting in the habit of daily exercise.
To raise awareness and provide support to patients and clinicians regarding the importance of regular physical activity (150 min/week).
Extending personal boundaries on a course.
We will work toward our goal by:
Disseminating research-based data on the benefits of regular exercise and exercise interventions.
Providing practical resources that offer guidance on ‘how-to’ safely engage in exercise.
Supporting clinicians who care for patients with muscle GSDs.
Offering opportunities to ‘get moving’, such as the ‘Annual Walking Week’.
Providing funding to researchers.
We have published books and leaflets promoting and guiding exercise.
The publication of the Clinical Practice Guidelines has made available, with Open Access, the guidance on both aerobic and strength training.
We have published the leaflet “At the gym with McArdle’s” which people can take to their physical therapist or personal trainer to brief them on McArdle’s and our particular requirements.
We have published the Training Support page on our website to provide all the resources needed to work with professionals on a tailored exercise program.
We led the development and publication of the Continuum of Care Model for McArdle’s which now guides clinicians on the six stages necessary for their patient to reach an optimal state. This of course includes the essential regular physical activity. Published with Open Access in Neuromuscular Disorders, July 2023.
Each year we have operated our Annual Walking Week to encourage those with muscle GSDs to be active, wherever they are. It is difficult to achieve that motivation and we ideally need to find more effective channels.
We regularly work with researchers to ensure that the patient perspective is included in their research objectives. In addition, we try to provide funding to cover the cost of Open Access, so that there is no barrier to specialists, GPs, emergency doctors and patients themselves, having access to new research.
The proportion of people with McArdle’s who maintain aerobic fitness through regular physical activity is growing. As this reaches a critical mass, we will turn more attention to the other muscle GSDs and encourage research, which will enable us to promote proven strategies for those conditions.