My 80-year-old husband has Parkinson’s dementia. Over the past year or so he slid into a moderate stage. Six weeks ago, he had a focal to generalized (grand mal) seizure. Since then, he has struggled with his identity.
He says, “I don’t know who or what I am.”
During these periods he doesn’t doesn’t know who I am, and he is surprised to learn he is married and has two children. He also doesn’t recognize our home.
He has even asked who that person is in the mirror.
This “amnesia” can last a few hours or all day, and it happens every day. It doesn’t seem to be prompted by anything, e.g., mini-seizures. He talks of generalized confusion throughout the day but is quite acute in other areas (reading, comprehension, completing household tasks).
A neurologist in the hospital said this memory loss was temporary post-seizure confusion and would go away. His family physician repeated that diagnosis 10 days later. A week after that, his geriatric specialist told me that people with dementia can suffer permanent damage after seizures but she didn’t find this identity issue concerning.
He is on anti-seizure meds (Dilantin) and his doctors say it’s critical he takes them even if they cause side effects.
Thankfully, he remains high functioning at home. However, as I thought “loss of self” was a late-stage indicator of dementia, I am concerned that he has taken a precipitous drop.
Can anyone share similar experiences and/or diagnoses with me? Thanks in advance.
I say is/was because 3yrs ago he was operated on to remove the damaged part of his brain that was causing the problem. He has been seizure free but still weaning off tye Meds. Until he is completely off, he won't know if he is seizure free.
I am sorry that you are going through this. It’s hard. Wishing you peace during this difficult time.
Do know that for every case the individual's problems, and the brain's reactions can be as individual as their own thumb prints. As an RN I managed to see it all. I sure do wish you good luck. You will find online the Parkinson's disease forums at Parkinson'sDisease.net and you will even find that Michael Fox has an informative site. I hope you find answers, but sometimes they are not clear in black and white but have tendencies to be all over the map in shades of grey.