Abstract
Individuals with myotonic dystrophy (DM) type 1 are less active than healthy individuals, which may result in secondary complications and decreased functional abilities. Therefore, the purpose of this study was to document the physical activity profile and barriers to physical activity in persons with DM. Individuals with DM were recruited during the Empower 2011 patient and family conference sponsored by the Myotonic Dystrophy Foundation. Participants were asked to complete a survey that included a Demographic/Clinical profile, the Barriers to Physical Activity and Disability Survey and the International Physical Activity Questionnaire. Physical activity in terms of number of days and time (in 10 min increments) over the past 7 days was reported. A multiple regression model including age, number of current clinical problems, and the number of barriers reported was used to predict the amount of sedentary time (sitting time). 107 (53% male) participants with DM (65% DM1) reported finger and hand weakness, fatigue, day time sleepiness, gastrointestinal issues, and leg weakness as the most common clinical problems. Participation in at least 1 day of activity was reported by 15% of the participants for gardening, 69% for household activities, 42% for leisure time walking, and 22% for moderate intensity level leisure time activities. Lack of energy and motivation were the most common barriers to physical activity reported. Number of barriers was a significant predictor of the amount of time spent sitting. Persons with DM have decreased physical activity and spend a significant time sedentary and are limited by a lack of energy and motivation. Administration of this survey at the conference may have influenced the report of physical activity as it may have been modified due to travel and conference participation. Further investigation is needed to better understand additional factors that contribute to inactivity.
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