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Lived Experience With Dystonia

a patient driven survey

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  • SURVEY RESULTS
    • Download full study PDF
    • Results summary article part 1
    • Results summary article part 2
    • 1. Results Title Page
    • 2. Table of Contents
    • 3. Reasons for the project
    • 4. Reasons for the website
    • 5. Reasons for the online survey strategy
    • 6. Similar surveys
    • 7. Survey considerations and disclaimer
    • 8. Survey question considerations
    • 9. Feedback from patients and researchers
    • 10. Results – website views
    • 11. Results- survey statistics in total
    • 12. Pain
    • 13. Appearance
    • 14. Movement – technical aspects
    • 15. Mobility – sitting, standing, car
    • 16. Body condition symptoms
    • 17. Symptom progression
    • 18. Daily Activities – what dystonia does to you
    • 19. Sensory tricks
    • 20. Eyes
    • 21. Face
    • 22. Jaw, mouth
    • 23. Vocal cords
    • 24. Neck
    • 25. Shoulder, arm
    • 26. Hand, fingers
    • 27. Leg, foot
    • 28. Trunk
    • 29. Coping- how a person adjusts to dystonia
    • 30. Medical consultations and tests
    • 31. Medical treatments
    • 32. Effects and side-effects of treatment
    • 33. Alternative medicine
    • 34. Moods and outlook
    • 35. Describing Dystonia
    • 36. Possible causes or links
    • 37. Technology
    • 38. Identifier categories
    • 39. Music, rhythm and reverse sensory tricks
    • 40. Sleep and dystonia
    • 41. Orientations of dystonia: sidedness, open-closed, up-down, curled- straight
    • 42. Common ground with other disorders
    • 43. Conclusion
    • 44. Bibliography
    • 45. Index
  • History of Dystonia
  • Surveys
    • Reason for Survey and Goals
    • Disclaimer
    • Sample Questions
    • Focus Group and Feedback
    • Similar Surveys
    • Download Poster
  • Patient Experience
    • Not laughing, but coping
    • Technology and Dystonia
    • Inspiring People who have Dystonia
  • Types, Incidence, Medical Terms
    • Types of and names for Dystonia
    • Medical Terms They Use
    • How common is it? Incidence and Prevalence
  • Sensory Tricks
    • When it is easier: Tricks
    • Sensory Tricks- history
    • List of sensory tricks
  • Inventions needed
    • Tech Devices and Dystonia – July 2025
  • Resources
    • Resources for Patients
    • Bibliography
    • Current Research
  • Public Perception
    • Media Portrayal Of Dystonia
  • About/Contact

Tech Devices and Dystonia – July 2025

Tech Devices and Dystonia July 2025 dystoniasurveys.orgDownload
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