Today we met with the director of the neuroscience center at Overlook Hospital (he's a neurologist, Dr Halprin. Last week we met with Dr Papka, Marcia’s neuropsychologist.
Dr Papka diagnosed Marcia with Primary Progressive Aphasia (PPA) and told us this was a consensus diagnosis, having consulted with Dr Halperin. That was the heavy news we were dealing with last week.
Anyway, Dr Halperin didn't mention anything at all about PPA. Didn't have Dr Papka's report, didn't reference any "consensus" diagnosis. What he did cover with us was the results of the EEG, PET scan and CT scan. EEG and CT scan showed normal brain function. He said the PET scan interpretation came back with a diagnosis of Alzheimer’s. I’m quite sure I couldn’t breathe for several moments. This had not ever been in my consideration set for Marcia’s issues. I don’t know much about Alzheimer’s, but thought it to be a disease of memory, and certainly not something that happens to someone as young as Marcia. Marcia hardly flinched. About a year and a half ago, Marcia told me she thought she might have Alzheimer’s…..
But there's good news.
Dr Halperin says he doesn't believe Marcia has Alzheimer’s. I've learned a lot about neurological diseases recently, but was unaware of the similarities between Parkinson's, Alzheimer’s and PPA. Similarities in that they are all progressive, with no effective treatment. One affects the body, one memory, and PPA, which is more uncommon, affects language and comprehension. Dr H doesn't believe Alzheimer’s is right because Marcia tests fine for memory. He now wants to put on a "full court press". We are scheduling at spinal tap, hopefully next week. What they are now looking for, and can possibly find in spinal fluid, is a brain infection (least likely), blood vessel inflammation or some other brain inflammation. Marcia asked Dr. Halperin, "You mean you've seen people like me who have recovered from this". He said he has!! I went from not being able to inhale, to feeling on top of the world in a matter of minutes. Hope was not what I was expecting to get from this conversation!!
No promises or false hopes, but a treatable hope. I think PPA is still a very real reality, but we are suspending thoughts until these treatable options no longer look viable.
Until last week, we were not at the diagnosis stage. Just testing of all kinds. Lots of it. And that's why communication from me has been lacking. Marcia would also prefer this to be kind of low key. Looks like we are in the testing stage a little longer, and this is a good thing.
On the way home, Marcia and I stopped at the “scenic overlook” on Route 78. Have lived in NJ for 16 years and we’ve never stopped to see it. Have also spent the last week thinking about a life with PPA, lost speech and communication, coping, how to talk to the kids, etc…. Having Dr. Halperin give us hope was a 180 degree change from where I was just a few hours ago. For those who only think NJ looks like Newark, this overlook is a must see. Today was a great day: beautiful sunshine, great view…..and high spirits.
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