Investigating passive movement in people with glycogen storage disease

People with glycogen storage diseases (GSDs) can have muscle weakness which makes it very difficult to exercise. This can limit physical activity and impact quality of life. Previous research has shown that exercise can be safe and have a positive effect on health in people with GSDs which involve muscles (e.g. Pompe disease). Despite people with GSDs wanting to increase their physical activity, many say there are significant barriers to do this.

Dr Philip Hennis and team believe that ‘motor-assisted passive movement exercises’ could help people with GSDs increase their activity levels. This involves a device that can move the limbs without the individual actively being involved. These devices may also be portable, so has the potential to be used at home. The researchers think that increasing activity levels could improve quality of life for people with GSDs and potentially reduce muscle weakness.

This project aims to investigate the use of ‘motor-assisted passive movement exercises’ in people with GSDs. It will focus on whether the devices are beneficial, easy to use and if there are any barriers that prevent them from being used.

The team will run interactive workshops, where people with GSDs can use a motor-assisted passive movement device alongside healthcare professionals. During and after these workshops, participants will be given the opportunity to provide feedback on topics including if they experience any muscle pain or discomfort. The team will also monitor participants engagement with the device and any challenges experienced.

People with muscle wasting conditions often are unsure whether to continue exercising, or how safely to do so. This can stop people from being as active as they would like to, which can have a negative effect on their mental health and quality of life.

This project aims to investigate if using motor-assisted passive movement devices has the potential to help people with GSDs exercise, safely. If successful, this study could lead to a clinical trial to gather more evidence to confirm that the devices are beneficial for people with GSDs. Eventually, this could lead to the devices being used as part of standard care.