Exercise knowledge, barriers and motivators among LRRK2 G2019S mutation carriers

People with a Gly2019Ser mutation in the leucine-rich repeat kinase 2 (LRRK2 G2019S) are at increased risk of developing Parkinson's disease (PD). Recent evidence suggests that exercise may delay or prevent the development of clinically overt symptoms of PD in people at risk of PD. We determined whether LRRK2 G2019S mutation carriers with and without manifest PD are aware of the relationship between exercise and PD and how they differ in awareness, barriers and motivators to exercise. We deployed a survey among 4422 LRRK2 G2019S mutation carriers. In total, 505 (11.4%) of them completed the survey, of whom 105 had self-reported manifest PD. Ninety-two percent of the LRRK2 G2019S mutation carriers with manifest PD and 63% of those with non-manifest PD were aware of the relationship between exercise and PD. Lack of motivation was the top barrier for those without manifest PD, while having an injury/disability was the most common barrier for those with manifest PD. Improvement of body functioning was the top motivator for both. The fact that many at-risk individuals are not aware of the importance of exercise and would exercise more with fewer barriers creates opportunities for trials using exercise as a possible prevention strategy for PD. •One third of non-manifest LRRK2 G2019S mutation carriers was not aware that exercise might help to slow down PD development.•Many respondents experienced barriers for exercise and reported that they would exercise more when they have fewer barriers.•Top barriers were lack of motivation (mutation carriers without manifest PD) and disability (those with manifest PD).•Awareness of the benefits of exercise for PD prevention can be increased, particularly among non-manifest mutation carriers.•These results show opportunities for trials using exercise as a possible prevention strategy for PD.