For those who care for someone with Parkinson's disease
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| Anyone caring for someone with Parkinson’s dementia? Any specialist besides neurologist for diagnosis? My PWP sleeps a lot, puts his pills in his water instead of mouth, goes to bathroom in the night, several times, but doesn’t use the toilet, has been on Namemba and donezipril for past two years. Donezepril was recently changed to Excelon patch, the change took place after acting differently. Has started having difficulty with fork and knife when eating, not due to tremors as he has hardly any tremor. There are a lot of little things having difficulty with and was just wondering what, if anything, has been done to help i.e. doctors, activities, etc. |
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Vicscare Oh yes. After 16 or so years of PD my husband began to show signs of PD dementia about 4 years ago. A community neurologist usually can diagnose PD, but will not have the detailed and nuanced knowledge required to properly medicate and follow a person with PD. It is, in my experience (and is the consensus here, I'd say) essential that the person with PD must be followed by a neurologist who specializes in Parkinson's disease. Usually that means a Movement Disorders Specialist. A urologist who knows PD may be able to assess the urination problem. A PT evaluation and possible 4 week intensive LSVT BIG program, with consistent follow through (ongoing exercise) makes an enormous difference in balance, flexibility, gait, etc. for many people. An OT evaluation may be able to help with activities of daily living. How long has your person been diagnosed. PD is far more than tremors. You might benefit from reading one of the resources on this page. I swear by the book by Ahlskog on medications. Welcome (to the club no one wanted to qualify to join). VV |
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| VioletV- PD diagnosis about 9 years ago. He is under care of a nerve disorder neurologist who is the one prescribed the memory meds. Don’t think he has been officially diagnosed with dementia but have appointment May 1 for follow up and will ask then. He has also done the LSVT Big twice now, there is a large waiting list to take again, waiting for opening. I am knowledgeable about the symptoms, but the dementia part seems to have come suddenly and neurologist thinks might be at end of the memory meds, that’s why changed to Excelon patch. The book on the meds I think would like to read, thank you for the suggestion and your reply. |
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HI My husband had PD Dementia for the last year he was with me. It was diagnosed by his PD neurologist. I came to the conclusion that dementia is dementia and what you call it is not as helpful as one might think. The meds never helped him as they never heped my Mom who died a 99 with infarc dementia after a hip fracture. Just love him and be with him as much as you can. Don't play games and ask him what he had for lunch. He does not remember. I wish my husband was back with me dementia and ll Sheila512 |
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My husband has dementia with started about 2 1/2 years ago. He'll be 70 this year and has had PD for 11 years. He had an operation where they removed his lower right lobe and I often wonder if that caused the dementia. It's the hardest part of having Parkinson's as they aren't always themselves and it so frustrating to work with him at times when he doesn't follow my instructions. Sometimes he calls me names or tell me to get away. He reacts better with the help I have coming in so that takes some of the load off me. He has been gong to a MDS but the specialist said that he doesn't need to come in for the next appointment. I think he realizes that there isn't a whole lot he can prescribe at this point and to just keep using the meds he's been taking. He does see the MDS every 3 months for Botox for his eyes and glands (for drooling). I am just trying to hold on right now until he goes to Respite in the nursing home for 60 days. I definitely need a break before I end up in the hospital. I fell a couple of weeks ago when my leg gave out. I have a problem with a ham string and I have to bend over to get my husband dressed or shoes on even though I have help in the morning and night time. If he gets out of bed to needs his pants changed another time when they aren't here, then it 's up to me. |