Helping Those Who Care for Parkinson's Patients
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| It is mentioned often by Caregivers that We (patients) put our best foot forward figuratively and literally when asked to walk for our Doctor during visits. And yeah, some/most times we do. However don't get frustrated or angry it is human nature normally to do this, a see Doc it is working kind of thing. A neurologist isn't just looking at our feet and stride (gait) they may stand and watch us walk to the exam room or stand and observe how we adjust if their arm is extended through the doorway (in an after you gesture). One early sign of Parkinson's is decreased or lack of arm swing while walking. Neurologists watch for this because it is also a sign that we need to increase our medicine. Our Neurologist will watch and assess several things while we walk that many patients and caregivers aren't aware of. Even if We patients are clever enough to get everything in sync after a couple of steps our posture slumps or arm swing lessens or is gone or balance begins to waver or we shuffle our feet. So even in walking just a few feet our disease betrays us. We just can't hold everything together to fool the Doctor. From the minute our name is called the Doctor is observing actions or movements even though We patient and caregiver may not be aware that They are. I posted this hoping it will help a little next visit when after the short (few to several steps) walk and the Doc. says you seem to be walking pretty good or doesn't remark on the walking and your PWP looking at you and smiles you can just smile back at them knowing we haven't fooled them at all because we can't correct and hold corrected the signs the Doctor is looking at. Hey the ride home may be better you're not harboring being mad because your PWP fooled the Doctor and Your PWP is smiling thinking they did. I hope this helps. |
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Great response. I am afraid I felt that way several times, although it really isn't hard to see how astute Carl's neuro is! Carl started the Rock Steady Boxing and it is really a work out! But, in response to this...the trainer walked by Carl sitting casually in a chair after the class and said, 'Carl, no slouching around me! Pull those shoulders back!' I had to laugh, but it was good to have someone else tell him! Hugs to you, Al! |
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| Not so much with the neuro, but mom sometimes has the opposite problem--she has some anxiety and depression related to the Parkinson's, so even when she is improving she can be very negative about all her symptoms. And it's not that she's lying, it's just that is how she perceives things (it's sad because she was never like this before the Parkinson's, so it never really occurs to her that she's perceiving things incorrectly). Her primary knows this, but before I figured some things out, her primary and his sub doctors would address everything she was complaining about (usually with a new prescription, or changing a prescription), when usually the problem was side effects and interactions of things she was already on. And then a new prescription, or changing one, would only cause us to "chase our tails" so to speak, with new side effects, or new withdrawals (and not knowing what was what, she'd have a new set of complaints, and then we'd start over again at the next appointment). She was having so many side effects when we first saw our new neuro that she couldn't have faked doing well if she wanted to. (She can fake doing well sometimes on the phone. She will seem to be having a very difficult time, and if the phone rings, she can be very close to fine for 5 or 10 minutes. Sometimes she has difficulty doing even that. And even so, she virtually ALWAYS tells the person on the other end that she isn't doing well, feels awful, etc. If she says "ok" or "so-so", I know she's doing well because she rarely says anything that positive.) |
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| Well we know everyone is different so there are patients who like your Mom who may be opposite. I just have read complaints over these past months and it was a common thread of PWP walking well before Doctors and not at home so I thought I'd toss it out there as a what might be happening verses what we think may be happening. Opposite problems will occur in some as I said at the beginning of this response. It in no way diminishes problems of those who present the opposite. Thanks for mentioning your Mom's problem as I'm sure others are dealing with the like. I addressed the fooling the Doctor because it was the problem many had mentioned. |
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I'm thinking this through and if Ben was inclined to try to present better at the neuros office, he probably could. We get walked to our room, weighed, and statted by an assistant or nurse. He only sees the neuro for about fifteen minutes. If you really want to feel the best you can, you have to be 100% honest with the people who can help. Medical professionals are chronically overworked and overbooked. We can't ask them to be mind readers too. And when you only see your specialist a few times a year, you can't afford to waste that visit pretending everything is a-ok. Caregivers voices should carry greater weight in some cases than the patient, and if you have a good doc they do rely on those less biased descriptions of daily status. We see things nobody else - including the patient - can see. |
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| I didn't mean to sound critical. That was not my intent at all. I was just pointing out some differences in mom's experience because they occurred to me. I think I sometimes write a lot here to vent, or get things out that might shine a helpful pattern on something for someone (sometimes for me). Mom's disease, medications, and side effects/withdrawals are often like a game of 3D chess. At least with a forum like this we can ask each other what the next pattern of moves might work best. |
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Hello Lohengrin, Thank you for the feedback. Please don't take my comments as complaint. This is nothing new for my PWP--he has historically thought he could be-bop back from all medical procedures, etc. The visit with the neuro is short but, indeed, I can see him observing all the little things that the patient may not realize are being noticed. It is quite apparent that once my husband thinks the official exam is over, the slowness is actually exacerbated. Thank you for providing insights! ~Lynn |
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I have been searching for an article I read some time ago, but I can't find it. The gist of it was that it's a well-known phenomenon that some patients seem to perform better at the doctor's office than they do at home. Although I'm sure that for some patients this is purposeful (wanting to appear as well as possible for the doc), the article suggested that for many this is not conscious at all. Rather, some of the symptoms that are troublesome at home (tremor, poor gait, etc) are occurring because those things normally happen unconsciously, and the part of the brain responsible for unconscious movement isn't doing it's job as well as it once did. But the very act of going into the doctor's brings some of those tasks into the conscious part of the patient's brain, where they are handled by the brain slightly differently than they might at home. Add to that the stimulation/excitement/mild stress of a visit to the doctor is causing the brain to be "on alert" in a slightly different way. So the PWP may not be trying to be any different than they usually are, but their brain is behaving a bit differently anyway, whether they like it or not. My husband has frequent and problematic freezing at home, and he would like the doctor to see it and address it, but it never happens at the doctor's office. I've told him that if that's going to be the pattern, I may start trying to video the freezing on my phone, and bring that in to the doctor's with us. |
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| Juniper, You've brought up an interesting phenomenon that can happen to many at the Doctors. It would be great for you to video his freezes. You bring up the fact many preform different at the Doctors. When freezing occurs we break it with outside stimulation so at the Doctors there is much going on around us to act as stimulation. I think it would be great and welcomed by the Doctor to see your husbands freezing recorded so He can suggest changes if any are needed (like a night light or placing a chair in a different spot etc.) He may even send a PT or OT in to look for and address problem areas. Thanks for bringing this fact up. |