1. title page
2. table of contents (pg 2)
3. reason for the project (pg 3)
4. reason for the website (pg 10)
5. reason for the online survey strategy (pg 11)
6. similar surveys (pg 17)
7. survey considerations, disclaimer, pros and cons (pg 21)
8. survey question considerations (pg 24)
9. feedback from patients and researchers (pg 27)
10. results – website views (pg 31)
11. results – survey statistics in total (pg 35)
12. pain (pg 42)
13. appearance (pg 54)
14. movement (pg 59)
15. mobility- sitting, standing, car (pg 79)
16. symptoms -body conditions (pg 85)
17. symptom progression (pg 99)
18. daily activities – what dystonia does to change the day (pg 115)
19 sensory tricks (pg 141)
20. eyes (pg 171)
21. face (pg 183)
22. jaw, mouth (pg 191)
23. vocal cords (pg 210)
24. neck (pg 232)
25. shoulders, arms (pg 260)
26. hand, fingers (pg 268)
27. leg, foot (pg 298)
28. trunk (pg 321)
29. coping – adjusting to dystonia (pg 338)
30. medical consultations and tests (pg 369)
31. medical treatments given (pg 395)
32. effects and side effects of treatment (pg 412)
33. alternative medicine (pg 454)
34. moods and outlook (pg 470)
35. describing dystonia (pg 516)
36. possible causes and links (pg 524)
37. technology (pg 565)
38. identifiers (pg 576)
39. music, rhythm and reverse sensory tricks (pg 582)
40. sleep and dystonia (pg 590)
41. orientations of dystonia- sidedness, open -closed, up-down, curl- straight (pg 599)
42. common ground with other disorders (pg 609)
43. conclusion- aims for use of survey results (pg 622)
44. bibliography (pg 624)
45. index (pg 633)
Lived Experience With Dystonia 