Table 7.

Sample quotes from participants specific to SPMS impacts

Participant	Quotes
Work or school
Patient	I ended up quitting my job in October 2015. So that's when I really, I knew for certain that things were not good because I really was experiencing a lot of cognitive issues that I hadn't experienced before and really erratic emotions and things were just really… they seemed weird to me
Care partner	She did have to stop working. She always performed very well at work. She got several merit-based raises during her career at her last employer and then… it's almost… Well, alongside the progression of all of her symptoms, she started getting poor performance reviews. And then, that was sort of creating a feedback with where she had more anxiety about work and performed worse, and we sort of realized at that point that she was… her disease was preventing her from performing her job functions
Physical activity/mobility (walking, standing, stairs, carrying or lifting heavy items)
Patient	Carrying, my arms are very weak. I can't go to the store or anywhere for very long
Care partner	It definitely has affected her walking ability. We have a two-story house and the stairs have become much more difficult for her. It's pretty much, if she comes downstairs, she kind of plans ahead, gets it all together, comes downstairs once and does what she needs to, so she only has to do the stairs once and then back up when she's done and that's about it
Household chores
Patient	In my wheelchair, I could wipe down the kitchen counter, do the dishes. I wasn't able to cook, but I could do the dishes, wipe down the kitchen counters, clean the bathroom counters, all from my wheelchair… You know, do laundry and stuff like that. Bend over and pick up the dog food bowl. But for whatever reason, at that 10-year [mark], that's it. It all stopped
Hobbies/recreational activities
Patient	I do miss, uh, being able to sports. I do miss, um, like my kid's going to play soccer. He played soccer last year. I do miss the [inaudible] be out there and be like practice with him. You know show him things
Social relationships
Patient	It's just harder to do everything so I never want to talk on the phone because I have difficulty talking. So I don't keep in touch with people on the phone anymore
Care partner	I mean, we can still have people over to the house, and they understand her difficulty and everything. But we just can't go to other people's houses
Family life
Patient	I have a 14-year-old daughter [laughter] and so it's sometimes it is very hard for me to… I don't want to say deal with her, but I feel more like a child than she is sometimes
Care partner	She doesn't like to go out with her family because she doesn't like to slow them up. So there's just things that she just did before that she can't do now. Or let's say, like her family will try to take her somewhere, and they'll kind of slow down for her, and they're doing it out of kindness or courtesy or so, but it bothers her
Self-esteem
Care partner	She tells me sometimes that, you know, she just wishes she could do things like normal people. She wishes she could still do the things she used to do, um, that sort of thing. And she talks about, she talks about being a burden to me and wishing she could help earn money for the family and those sorts of things
Emotional impacts
Patient	I just would cry… What is it called? I don't remember. And not because I was sensitive or anything. Just because I want… my body just wants to cry, you know. We can have a conversation, I'm not happy with what you said, and I would cry. I'd be talking and I'd just start crying
Care partner	He gets frustrated when, um, when he wants to be able to do something and it's difficult for him. Um, or when he feels like he's not capable… just I think the emotional impacts or impact is what his future looks like or how long he's going to live… he worries about being a burden to the family

Participants also reported other impacts to activities of daily living involving dressing or eating and intimate relationships