Table 3 Patient-reported ‘most bothersome symptoms’ and ‘symptoms most important to treat’

  Tremor

“So when I get really scared, I really shake. And it’s embarrassing. So, so I might say [the most bothersome symptom is] an embarrassing tremor.” (GBA-PD patient, H&Y stage 1)

  Walking limitations

“So when I get really scared, I really shake. And it’s embarrassing. So, so I might say [the most bothersome symptom is] an embarrassing tremor.” (GBA-PD patient, H&Y stage 1)

  Bradykinesia/ slowness

“I have to do everything a lot slower than I’ve ever done it before … every year it seems to get a little worse.” (iPD patient, H&Y stage 3)

  Balance/ postural instability

“I can’t be on my feet more than 15 min at a time. My balance coordination is way off.” (iPD patient, H&Y stage 2)

  Rigidity/ stiffness

“What happens is the leg stiffens up. Most of the problems are in the legs right now.” (iPD patient, H&Y stage 3)

  Limb weakness

“I don’t really do strenuous exercises. But if I’m going shopping sometimes, my legs get weak.” (iPD patient, H&Y stage 2)

  Speech problems

“I feel it takes a little bit more effort for me to talk so that people can hear me and understand me clearly.” (GBA-PD patient, H&Y stage 2)

  Memory loss

“… when I talk it’s hard to talk in paragraphs. I have these long gaps in my speech. Um, there’s one now.” (GBA-PD patient, H&Y stage 1)

  Attentional impairments

“I’m having problems concentrating, even on the local newspaper, which aren’t complicated articles at all, I have trouble getting to the end of it.” (GBA-PD patient, H&Y stage 2)

  Fatigue/ tiredness

“As the day progresses, I run on half battery, a quarter battery, and by 3 o’clock it’s a dead battery.” (iPD patient, H&Y stage 2)

  Pain

“I’m tired of the pain, I’m always in pain, my muscles cramp, they ache.” (iPD patient, H&Y stage 2)

  Urinary problems

“Oh my god, I see a urologist. I have to wear pads. I have urinary leakage. I have no control over that …” (iPD patient, H&Y stage 2)

  Orthostatic hypotension

“I feel dizzy when I stand up, especially like if I’m gardening. So if I’m going to go, you know, like squatting, leaning, digging and I stand up I feel dizzy like maybe like I’m going to faint.” (GBA-PD patient, H&Y stage 1)

  Cramps

“Your muscle is tightening up and it hurts like hell and it does happen every once in a while.” (GBA-PD patient, H&Y stage 2)

  Constipation

“It’s getting the movement started [that is difficult] and that’s my sphincter muscle again being stiff.” (GBA-PD patient, H&Y stage 2)

  Tingling numbness

“Sometimes I’m getting some tingling, numbness, like in my back.” (GBA-PD patient, H&Y stage 2)

  Physical movement difficulties

“… it’s a normal car. Just turning in that position and balancing myself to get out on my feet, that’s challenging.” (GBA-PD patient, H&Y stage 2)

  Dressing

“I couldn’t do the buttons on my shirt. I just couldn’t do it, so my husband would do it for me.” (GBA-PD patient, H&Y stage 2)

  Decline in physical activities

“When I first came down here, I could barely, uh, stand up in a boat to go fishing …” (GBA-PD patient, H&Y stage 2)

  Handwriting

“It was difficult to read my own handwriting and it was small. And, uh, the characters were small and not as clean and smooth as I normally would have written.” (GBA-PD patient, H&Y stage 3)

  Dyskinesia

“I felt that sick from the dyskinesia … Your body … is pulling and moving and hurting. So yeah, it could be painful.” (GBA-PD patient, H&Y stage 2)

  Eating and drinking

“… because of the loss of smell, food doesn’t taste as good, even water, and it’s gotten worse. As time goes on, it’s harder and harder for me to find something that I like … So I’ve lost, I’ve lost weight.” (GBA-PD patient, H&Y stage 3)

  Hygiene and grooming tasks

“Before I had Parkinson’s, I would take a shower every day. Now, um, I’m getting that I take a shower every other day, but I only do my hair once a week.” (GBA-PD patient, H&Y stage 3)

  Household activities and chores

“I used to be a very self-sufficient person. I am no longer self-sufficient. I don’t cook. I don’t do dishes. I don’t clean up. I really just can’t. I would put myself in jeopardy of falling. And I don’t want to do that.” (GBA-PD patient, H&Y stage 3)

  Non-physical hobbies

“I mean sometimes I can’t read a book because I can’t hold it. That’s how stiff I am and painful.” (GBA-PD patient, H&Y stage 2)

  Daytime sleepiness

“You go to bed tired, you wake up tired, during the day you’re tired. I’m tired now. I was tired when I got up this morning.” (GBA-PD patient, H&Y stage 2)

  Sleep disturbances

“I mean I sleep very restlessly. Of course I have dreams [REM sleep disorder] all night long, which is part of Parkinson’s. And so I’m restless in my sleep.” (GBA-PD patient, H&Y stage 2)

  Work

“I find myself getting tired more easily ‘til I realized I was unable to practice.” (GBA-PD patient, H&Y stage 3)

  Outings

“It eats up time if I go grocery shopping … I don’t want to feel like I’m, I’m weird or handicapped or anything, so I do it … The bad news is, it takes time to do it.” (GBA-PD patient, H&Y stage 2)

  Social isolation

“I’ve cut down a lot. I’m talking like 90%. I used to be out all the time with friends … Now I just don’t, I don’t want to do it.” (GBA-PD patient, H&Y stage 2)

  Family interactions

“Um, taking family trips, I can’t do that. Um, being dependable to show up for an event, maybe yes, maybe no, depends on how I feel rather than yeah, I’ll be there.” (GBA-PD patient, H&Y stage 2)

  Feeling fearful

“Me being scared … I’ve never been a person to be scared of anything really, but, um, realizing as I get older this is the thing that’s playing on my mind.” (iPD patient, H&Y stage 3)

  Depressed mood

“Depression: I mean, you know, it’s just feeling down and … you know, why do I have Parkinson’s or why am I so tired …” (GBA-PD patient, H&Y stage 2)

  Anxious mood

“… anxiety is really every day, every morning for four or five hours. And just, it’s a fairly crummy four or five hours.” (GBA-PD patient, H&Y stage 2)

  Fear of falling

“Well the only thing is with the legs it, uh—the weakness in my legs, I’m afraid I’m going to fall.” (iPD patient, H&Y stage 3)

  Treatment impacts (excluding dyskinesia)

“All day long, I’m either dosing or thinking about dosing … constantly worrying about where I’m going to be when I have to take my next dose, make sure I have water with me. You know, it’s just, it’s all consuming.” (GBA-PD patient, H&Y stage 2)