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Lived Experience With Dystonia
a patient driven survey
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SURVEY RESULTS
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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
Resources
Resources for Patients
Bibliography
Current Research
Public Perception
Media Portrayal Of Dystonia
About/Contact
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Lived Experience With Dystonia
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Lived Experience With Dystonia