Table 2.
CPs more likely to report and discuss “off” symptoms than PwP
| Theme | Exemplar quote |
|---|---|
| Prepares for appointments | I have about 8 weeks of charts that I'm going to take. I have taken a paper and put a grid on it. I'll take that in and show him (CP2) |
| We both will make notes if something unusual happens and keep a list of those things and then go over them with her so that we're prepared (CP5) | |
| I do a written preparation for every doctor that we, I mean even the dentist. I take a list of all the meds because, you know, he's taking a lot (CP15) | |
| Attends all appointments | I go to all doctors' appointments with him, every one of them, because he doesn't remember things, or he'll … not intentionally, but he'll forget to tell things (CP5) |
| I go to all the appointments with her, you know (CP6) | |
| I'm there when she has an appointment (CP10) | |
| Remembers or is aware of symptoms and details | I'm in on every doctor's appointment that he has because I want another set of ears listening to what's being said, cause a lot of times she doesn't remember (CP3) |
| She likes it when I go with her and I don't mind doing that because it gives another set of perspectives and memory of what might have happened (CP7) | |
| Doctor's name asked her yesterday about what percentage of the day did she have dyskinesia. And wife's name said, “Well, not much. Maybe 10%.” I had to say, “That's wrong.” I wish it was, but I would say minimally 40%, 50% of the day (CP8) | |
| He's not a good communicator with his doctor as far as his symptoms. He kind of forgets when he's had a bad symptom (CP17) | |
| Prompts/raises discussion of symptoms | They question me a lot as to try to discover how he's doing, how the symptoms are doing and should there be any medicine adjustments. I tend to bring up the cognitive problems…they don't seem particularly interested in dealing with it (CP1) |
| I need to make a list of questions. I usually go in there with quite a list and quite a stack of documents (CP2) | |
| Provides more complete or accurate information than PwP | He works extra hard when we're at the doctor to walk up straight and all of this. I tend to bring up more of his problems than he does (CP4) |
| He won't accept “off” symptoms. I tend to be more upfront and let her [the doctor] know what's going on, where he's more let's see if it gets worse, we don't need to tell the doctor right now (CP5) | |
| She and I were sitting side‐by‐side and the doctor was across the room. And when she said 10% I put my thumb pointing up and indicated it was more than that. I don't think she's even aware of it sometimes but I'm sitting on the other side watching and it's a lot more than that. And [my wife] didn't disagree. She said, “Well, you know, you're right. It just gets to be part of the day and I don't think about it.” | |
| Absorb information given by physician | We've learned that for either of us it's necessary for the partner to be in the room with the doctor because you don't hear, especially when there's bad news (CP8) |
| I always go with him. He takes his whole folder of information; I take my notes. He and I both believe that four ears are better than two (CP18) | |
| Monitors for new research findings on PD | We belong to a local Parkinson's group that meets monthly so we get a lot of information there and I'm usually online looking to see if anything new is coming up (CP5) |
| We're pretty Internet literate so we go on the Internet and find sources on there (CP9) |
CPs, care partners; PD, Parkinson's disease; PwP, persons with Parkinson's.