Table 6.

Sample quotes from participants specific to SPMS symptoms

Participant	Quotes
Fatigue
Patient	Now it's like it's hitting me more with frequent tiredness… I'll try to slam at least 3 cups of coffee, and that will not wake me up at all
Care partner	He falls asleep a lot, like, you know, in his wheelchair and just kind of nod off, you know, throughout the day, maybe six or seven different times throughout the day. Not every day, but, you know, most days
Incontinence (bowel, bladder)
Patient	If I say I got to go, you better get me to toilet because it's just a matter of time… Because sometimes I'll get that warning. There have been times where often I just go… The only thing that helps that is I get Botox in the bladder
Care partner	The incontinence and the bowel issues are sort of ever present now, whereas before they would be just, you know, occasional
Numbness/tingling in hands/feet
Care partner	He says he has that [numbness and tingling] all the time. He says that will never go away. So, I'm assuming yes. I don't ask him on a daily basis
Stiffness, spasms, tremor
Patient	Stiffness in the limbs, uh, pain in the back, uh, tremors hands. There are times at night, I'm lying in a bed and it almost feels like my feet are numb. But I can stand up and it's not like they've fallen asleep or anything, it's just a feeling I get
Care partner	Well, she does have leg spasms sometimes. I think those generally happen at night and they sometimes cause her to have problems sleeping
Visual/hearing/speech problems
Patient	I'm noticing that now that even my vision now is just becoming so blurry to the point that I need either extra eyedrops or glasses, one of the two
Patient	Well, you may be able to tell my speech is not good
Care partner	More recently her speech, sometimes she has a little trouble finding a word or just getting the word out once she's realized what it is
Mood swings (irritability, depression)
Patient	It was going good until that time [progression]… Then my mood swings would definitely severely change rapidly
Care partner	Kind of the same as before [progression], maybe a little bit more so, um, so just sort of depression around not being able to do the things she would like to do. Um, and, you know, frustration at that same thing
Problems with walking, coordination, balance
Patient	Before that, I could manage my wheelchair. I'd be able to pull myself up, and then at the 10-year mark, literally I lost the ability to sit up straight. If I bend over, I can't sit back up
Care partner	It's hard for her to stand up and walk around. She has a walker. Sometimes she loses her balance, every now and then
Temperature sensitivity or regulation difficulty
Patient	I get very cold very, very quickly. And then if I get cold, I'm kind of screwed because it takes me a while to heat up
Care partner	Very minor changes in temperature really affect her. She doesn't do good in cold at all

Participants also reported other symptoms, including cognitive dysfunction, dizziness, paralysis/numbness, reduced interest in or ability to engage in sex, sleep problems, hypersensitivity or reduced sensitivity of skin, and nerve or musculoskeletal pain