Table 4.

Non-motor symptoms and functions domain quotations

Non-motor conceptual domain	Example quotes	Participant ID
Autonomic	“When I get up in the morning, I will leak some just standing up as I’m off bed. And so, I’ve gotten to where I just have a towel handy and grab it” “Well, just not to be too gross about it, but it’s just… I mean I have just become horribly irregular in terms of bowel movement and also very hard stools”	12, 32
Cognitive functioning	“Concentration is really hard. I have to learn how to keep my brain focused now” “He says it’s like, suddenly everything stops: verbally, physically, everything” “People will say to you, ‘Do you remember when we did this?’ Quite vivid things, that I just can’t remember”	9, 206, 276
Eyes/vision	“Sometimes I get slightly blurred vision, yeah, occasionally, and it’s almost like kaleidoscope vision”	226
Fatigue	“I would really have to plan for it and we might be in the middle of something and I'd, I’ve just got to go to sleep for an hour and they wouldn’t understand that” “Now I really have to push myself to do things. But the fatigue will happen after about 30 or 40 min of doing things, like I said down the yard. Then I have to come in and sit down and just kind of regroup and let myself rest and then I can go at it again” “Other fatigue was sort of mental fatigue, I guess that goes towards apathy as well as the being less able to deal with the kids, when they’re fighting, and I’m sure it affects my parenting”	4, 12, 249
Light-headedness/dizziness	“Sometimes like if I stand up, if I'd been sitting and then I stand up quickly or I’m at a plane and I’d been seated for a while and I stand up, I feel a little lightheaded”	16
Neuropsychiatric	“I don’t want to move. Things like that make me anxious. And I just tell myself I can’t project. I don’t know” “Just the desire to get out of bed and get up and get going and everything else it is like I am still tired”	29
Heaviness	“It’s a sort of heaviness, your legs feel heavy and just an effort to get out of bed”	186
Pain	“I think that maybe the achiness is sometimes worse certain days than other days” “There are times like I’ll wake up in the morning, got to get out of bed and just have kind of a sharp pain”	7, 14
Sense of smell	“So, one of them was smell, like he has very, very, very bad sense of smell, like to the point that, like you could shove a flower up his nose and he wouldn’t smell it, that sort of thing”	7
Sleep/dreams	“Difficulty, it takes me a bit to fall asleep. It’s mostly difficulty in remaining asleep, kind of the waking, generally waking up at the 2–3 a.m. mark and getting back to sleep after that” “I’ll be having a dream and in my dream I’m screaming, but it comes out like someone’s got their hand over my mouth or something”	3, 19

ID identification