"I'm still the person I am. Not the body it has become." An active but challenging life with cervical dystonia.

BACKGROUND

Improvement of activity and participation for the disabled and chronically ill is an important aim of rehabilitation. Cervical dystonia is a neurological movement disorder characterized by involuntary contractions of the neck muscles. Until now, research has identified factors contributing to disability rather than factors which may make it easier to be active and participate in the community.

OBJECTIVE

Explore and describe perceived experiences of activity and participation in daily life as experienced by persons with cervical dystonia.

METHODS

Sixteen informants participated in this semi-structured interview study. Inductive qualitative content analysis was performed to understand and interpret experiences shared by the informants.

RESULTS

Results from the analysis generated two themes "An active life" and "A challenging life" and six sub-themes: Using helpful coping strategies, Accepting a new life situation, Adhering to BT treatment, Facing the negative impact of stress, Experiencing a negative self-image and Suffering from pain and fatigue.

CONCLUSIONS

Our results support the importance of actions using a rehabilitation approach that consider both motor and non-motor symptoms. Future studies should compare the effects of physiotherapy taking into account wishes and challenges in patients' everyday life versus traditional physiotherapy addressing mostly the motor disorder.