Assistance to and communication type of participants
| Followed up patients | ||||
| 2 | 4 | 6 | 10 | |
| Time since locked-in syndrome | 8 years | 7.5 years | 5.5 years | 7 years |
| Living arrangement | Lives in a nursing home/home with society-based support. Joint common areas. | Lives in an apartment with society-based support. Lives alone. | Lives in a house. Lives with family. | Lives in a house. Lives with family. |
| Personal assistance | No personal assistants. Gets assistance from staff. | External personal assistants+extra assistance from staff when needed night-time. | External personal assistance+partner as paid assistant. | External personal assistance+partner as paid assistant. |
| Amount | Assistance from staff 168 hours/week | Assistance—168 hours/week Dual staffing—10.5 hours/week Total—178.5 hours/week. | Single staffing— 168 hours/week. | Assistance—168 hours/week Dual staffing—80.5 hours/week Total—248.5 hours/week. |
| Communication | Alphabet board, blinking. | Mainly alphabet board (blinking sometimes). | Oral, alphabet board (pointing). | Blinking, eye-tracking device. |
| Nutrition | Percutaneous endoscopic gastrostomy (PEG). | Oral, pureed/semisolid. | Oral, solid diet. | PEG, occasional treat by mouth. |
| Locomotion | Electric wheelchair. | Electric wheelchair. | Electric/manual wheelchair. Can walk a few steps with support. | Electric wheelchair. |