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Topic "Performance at Doctor Visits" Go to previous topic Go to next topic Go to higher level

By makrivah On 2012.12.17 17:11
My husband and I visited the neurologist last Monday. I was amazed at his level of "performance." The MD described his gait as "athletic;" he usually shuffles. His recall was far better with the MD than at home. Etc Etc. To the point, is there such a thing as a patient seeing a doctor's visit as a test (rather than an evaluation) so the Parkie tries extra hard? I am confounded by the difference between my husband's abilities during examinations and when he is at home. Do others see this same phenonmenon? Is this normal? How do I encourage the same level of effort at home as he shows the doctor? Any advice is welcome!

By LOHENGR1N On 2012.12.17 23:45
makrivah, Hi and welcome to the forum. The behavior you describe is probably noticed by all caregivers/partners at the Doctors. Yes we Parkinson's patients are noted for such actions. So I myself would say yes it's normal as normal can get with Parkinson's Disease. I don't know if others view it as a test, I know I view it as an evaluation so if the Doc says I'm doing good then I must be doing okay right? (this is inside the disease thinking and reasoning). We can hold it together for a short time while interacting in public earlier in the disease. But it is tiring and wearing on us to do so, and as the disease progresses it becomes more so. I would say it is unreasonable to expect the same performance at home for any extended periods. Yes we try extra hard at the doctors and out in public, We want to be viewed as someone who is okay to be around, not make others uncomfortable. This only lasts for so long then the disease slaps us back to reality. We might even be a bit worse after at home from the Doctors or out in public because it is exhausting fighting back symptoms.

If it makes Him feel better I'd say let it go. Even though it makes You irritated or angry if He can feel good about Himself even for a few minutes try to let him. I used to do the same thing just like all my fellow Parkies. The disease will progress to where He can't hide it soon enough. Now even in My "good times" I have to ask my PCA or the store clerk to pick out the exact change from my trembling hand or I spill itt all over the floor. (talk about humbling experiences) but I digress and risk rambling on here so I hope I've been some help. Again welcome to the forum. Take care, best of luck and hang in there.

By jaxrock On 2012.12.18 07:03
Interesting topic......I've actually noticed it both ways....sometimes, my husband will walk straight into the doctor's office, looking fit and trim, and talking clearly. I think it makes the doctors feel good to see this, too...

But, at other times, he becomes a "patient"...........shuffles, asks all sorts of what-if questions about the future, occasionally even uses a walker on his visits. Then, when we leave the doctor's office, he wants to go out to lunch, or take a ride..

PD is defintely a roller coaster for all of us....patients and caregivers. Flexibility is the key to dealing with all of this, I guess.

It's hard for us not to get frustrated when we see these hour to hour, moment to moment changes - we always have to be prepared for who-knows-what...it's always a fight or flight mode, it seems, for us caregivers.

There are a lot of us out here......and we all understand.

Stay strong and Good Luck

By makrivah On 2012.12.18 21:26
Thank you for the replies. Yes, I am new to the forum, but not to PD. My husband was diagnosed in August 2005 at age 61. His physical symptoms are pretty well controlled (all things considered); kudos to his doctors. In the early days the non-visible symptoms never occurred to me, nor were they described. As the years go by and the executive functions diminish, and the daytime sleeping lengthens, and the facial masking deepens, and our conversations become shorter and less engaging, ... enough, I need not list them to you care givers... the lonely side of Parkinson's rears its ugly head. There is no anger or animosity towards my husband, just resentment towards the disease and what it has taken from us.

I hoped my post would verify what I felt was happening at the doctors; he wants to impress those "out there" with how well he is doing. I must simply accept that home is his safe place to relax and recover and, yes, maybe to not try so hard.

By parkinit On 2012.12.21 21:45
makrivah,

I feel this is quite common - especially with my spouse. He has even talked about how he may do better on certain tests and how he has memorized things in the past to help him do better (as far as cognitive tests).

I don't know if he could do so well today, so I guess I should be proud of him when he could still do the tests to his best ability - even though it was better than his daily "norm." However, I will admit that I was a bit upset that because he could perform better in the doctor's office, it didn't help the situation at home on a daily basis and truly assess his normal daily abilities. I know it may be frustrating. It has been for me, too.

By cmonge On 2012.12.26 11:05
My husband does the same thing! Then the doctor (who thinks he's a god because he did the DBS surgery and is a miracle worker) tells me he's doing great and hopes he stays this way for another 30 years! In the meantime, my husband is in Stage 4 and I see him declining daily so I know he won't make it another 10 without being in a wheelchair and a caregiver. It's very frustrating because you just want the truth.

By makrivah On 2012.12.27 09:44
Cmonge- exactly the point. I understand the doctor's intention to encourage our husbands but we caregivers need some TLC and encouragement too. I wonder if we requested a one-on-one appointment if we would hear the truth and receive helpful advice?

By cmonge On 2012.12.27 11:19
I often wonder that, but my neurologist has an ego. He want to think that the DBS performed a miracle. I know it helped tremendously but I don't think he is willing to give me the truth.


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