For those who care for someone with Parkinson's disease
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By Catbey On 2015.05.27 09:04
I've found this forum tremendously helpful especially right after my husband, 64, was diagnosed 4 years ago. I would characterize our journey with PD so far as less motor and more psychiatric focused. I'm wondering if anyone else has had this experience. His symptoms have been more the shuffling gait, stiffness, and behavioral/personality changes. The neurologist started him on mirapex initially and has added sinamet. He reduced the mirapex in the past year at the recommendation of a neuropsychiatrist Glenn saw a few times. She thought the mirapex was making him manic. He has been seeing his own preferred psychiatrist for the past 3 years who put him on lexapro for his depression. in my opinion he has done little to help Glenn with the PD. What has been the hardest for me is that the somewhat not so positive personality traits he had before PD the self focus and rigid thinking have worsened to the point that he is a really difficult individual to be around. He's childlike, demanding attention all the time, and one dare not challenge anything he says or does for risk of an outburst of anger. When there's a challenge its always the other persons fault. He has continued to have odd sleep patterns, jerking movements that wake me up and then getting up a 3 am to clean out the garage (we just moved). He's very tired during the day and shuts his eyes when ever he's not moving about. His cognitive skills have declined markedly exhibited by him not being able to figure things out and solve problems like he used to. He shows little empathy towards others and to me there's a growing sense that he's unaware of how he comes across to others. Yet he exhibits little initiative to do anything about his condition. The last neuropsychiatrist I got him to see indicated to us that she had doubt that he had dementia. When Glenn heard that he refused to see her anymore. My husband refuses to see any new doctor except for the ones he's been seeing and who reportedly continue to tell him he is fine with no signs of dementia. He has refused to sign a privacy form so that I can talk to his doctors so I'm kind of stuck. I'm now trying to get him to see a new Hopkins neurologist since we just moved to Baltimore and his other Drs are too far away. This dr has a focus on the cognitive side of PD. I'm hoping that if I can convince him to see this dr and get him to allow me to talk to the dr we can get my husband in for some extensive cognitive testing. Sometimes I wonder if his PD diagnosis is accurate because I see his symptoms as so different from others who write in the forum and my uncle who had PD for 27 years and was still working at Hewitt Packard for the first 10 of them. My husband has not worked in the past 3 years and before that he had a home based business where he did occasional contract work with the government. Now he doesn't do much and is on social security.

By LOHENGR1N On 2015.05.28 09:02
Hi, Catbey, welcome to the forum. There are other diseases that are Parkinson's like and over time and treatment can be sorted out as they manifest more and more differences. Many times Caregivers notice these differences quicker and more than the Neurologists because you live 24/7 with the patient and the Doctor sees them for a short time every few months at best. That said it might be good to see the New Doctor you mentioned. Also many Neurologists recognize the effects of medication don't explain the effects and or the actions that will cause in a patient so you're left with just a it's not dementia comment This leads to confusion for you, you know well it's not right or not the actions of a regular person or not the way he used to be. You think the Doctor doesn't care or isn't listening. It's not right and the Doctor should add to their reply it's not dementia, the medicine in some people causes them to act like that. However most doctors don't take that extra minute to explain leaving you months to worry and seek an explanation to your loved ones change and actions. I hope you get things sorted our soon for both your sakes take care, best of luck and hang in there


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