Objective: The objective was to conduct a survey to elucidate the impact of exercise and physical activity on dystonia and identify barriers to participation.

Background: Engaging in physical activity and exercise is vital for good health, reducing disease risk and enhancing quality of life. Many people with dystonia find exercise aggravates symptoms, although it is not clear why.  Knowledge about physical activity in dystonia is scanty, particularly the type and amount of exercise that aggravates symptoms. The aim of this study was to increase this understanding.

Method: An online survey was distributed to dystonia support groups worldwide who advertised the study via their networks.

Results: There were 252 completed responses (55 male). The dystonia types were; cervical (n=41) generalised (n=25), blepharospasm  (n=25), and a mix of focal hand, segmental, spasmodic dysphonia and “other”. 81 respondents were living with dystonia for more than 10 years, 23 for less than one year. 133 respondents reported current botulinum toxin injections, 52 indicated they had discontinued this treatment . Most participants agreed dystonia symptoms stopped them from exercising as they wished to, and 64 said exercise had slightly or severely decreased since diagnosis. The broad symptoms aggravated by exercise were muscle spasms, tremor, eye closure, pain and fatigue. 125 respondents reported dystonia was aggravated almost immediately during a single bout of exercise . In contrast, many (n =124) said dystonia was the same or better immediately after exercise while others (n=140)  said it was the same or better hours or days after exercise. Participants felt reducing pain, fatigue and motor symptoms would help to better engage in exercise. Common barriers were physical and bodily impairments, negative emotions such as depression and anxiety, lack of social support, attitudes of others, cost, lack of community facilities and exercise programs and lack of knowledge about dystonia by exercise professionals.

Conclusion: Many people living with dystonia find exercise has a negative impact on dystonia symptoms, with most decreasing participation after diagnosis. Some found symptoms were worse during a single bout of exercise, others reported slightly improved symptoms in the longer term. Significant barriers to engaging in physical activity require further investigation.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-impact-of-physical-activity-and-exercise-on-people-living-with-dystonia/