Alzheimer’s-Posterior Cortical Atrophy

SDianeL

Don’t remember if I posted this already but I recently realized symptoms my husband had early on several years way before diagnosis. He complained of dry eyes but I think he just couldn’t describe what he was seeing. He also had difficulty spelling common words and doing simple math. He became obsessed with the garbage, organizing it and taking it out several times a day. He would put things down and not be able to find them. I always thought those things were age related or OCD. It wasn’t until one day he didn’t understand the relationship of my 2 children and looked confused when my daughter was talking about her brother that I was smacked in the face by the reality that something was terribly wrong. The first diagnosis was based on a CT Scan and was Dementia-probably vascular. After I kept sending the doctors his behaviors monthly the Neurologist looked at the CT Scan again and sent ne a message that said “consistent with PCA-Posterior Cortical Atrophy” I had to look it up myself. Doctors were no help at all.

DWTired

https://alzconnected.org/discussion/71221/alzheimer-s-posterior-cortical-atrophy

Yes! Drs no help at all! I had to do my own research!

WIGO23

My husband’s first WRONG diagnosis was normal pressure hydrocephalus. My Dr. Google search revealed his symptoms were not at all consistent with that. It took us three neurologists, a six month wait to get into Massachusetts General Memory Clinic and then extensive testing over another two months before we got a diagnosis that made sense.

A year and a half of diagnostic time only to be told “we can’t do much but wait and see”. And that is how we are living with Alzheimer’s! We are waiting and seeing as it break our hearts stealing my husband’s life from him as I helplessly watch and care for him.