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

From: Patients’ experiences of Parkinson’s disease: a qualitative study in glucocerebrosidase and idiopathic Parkinson’s disease

Concept N = 20 (GBA-PD) Quote
Symptoms
Motor symptoms
  Tremor 18 (13) “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 17 (12) “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 17 (12) “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 16 (12) “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 16 (11) “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 16 (11) “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 12 (11) “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)
Cognitive/psychiatric symptoms
  Memory loss 18 (13) … 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 14 (10) “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)
Non-motor symptoms
  Fatigue/ tiredness 19 (14) “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 17 (12) “I’m tired of the pain, I’m always in pain, my muscles cramp, they ache.” (iPD patient, H&Y stage 2)
  Urinary problems 17 (12) “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 16 (11) “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 14 (10) “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 13 (9) “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 10 (9) “Sometimes I’m getting some tingling, numbness, like in my back.” (GBA-PD patient, H&Y stage 2)
Proximal motor impacts
  Physical movement difficulties 18 (13) … 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 14 (10) “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 16 (11) “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 15 (13) “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 14 (10) “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 12 (9) … 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 12 (8) “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 11 (9) “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 11 (9) “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)
Distal impacts
Sleep problems
  Daytime sleepiness 19 (14) “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 18 (13) “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)
Role functioning limitations
  Work 14 (11) “I find myself getting tired more easily ‘til I realized I was unable to practice.” (GBA-PD patient, H&Y stage 3)
  Outings 11 (8) “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)
Sleep problems
  Social isolation 17 (12) “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 11 (8) “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)
Emotional functioning limitations
  Feeling fearful 17 (12) “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 14 (9) “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 13 (9) … 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 13 (8) “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)
Medical interventions
  Treatment impacts (excluding dyskinesia) 12 (10) “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)