Posterior cortical atrophy

jnellieK

Just wondering if there is anyone suffering from or helping care for anyone with pca? Would love to find anyone I could talk to about this,my mom was diagnosed last year and not many people know about it including her doctor which leaves us feel so alone

jillsr

Hi. Not sure how much I can help, but my sister was diagnosed with this 18 months ago. She is 59 now. When visiting multiple memory care facilities none of their staff seemed to have seen this particular diagnosis before. So sorry we all have to live this nightmare!!

Ontario_1

Just joined ALZConnected and saw your post. My spouse (69) was diagnosed with Posterior Cortical Atrophy almost exactly 1 year ago.  Her memory and executive function have been stable since, but her visual capacity has been noticably diminishing.

Would be happy to share experiences.

Cpitta

I just joined and was relieved to see your post. My husband was diagnosed with neuro degenerative disease/ mixed dementia in 2019 at the age of 56. The neurologists could not figure out what was exactly happening. The fourth one knew of PCA, and while not formally diagnosing this, every single symptom fits. He has progressed to stage 5-6 where is memory, understanding, and functional skills have diminished rapidly. He now needs assistance with EVERYTHING, bc of his functional blindness and lack of executive functioning. I’m exhausted. It’s excruciating to watch because he is still aware that he has a disease and he cries all the time….this is so different from dementia where the person doesn’t know they have dementia. I wish I could find a support group for spouses of people with early onset dementia. If you are on Facebook, there is a wonderful group called PCA spouses. This group will make you feel seen and understood.

mom2boyz

I'm so sorry. It is exhausting and excruciating to watch our loved ones go through this. I'm not even sure what stage my husband is. He is still high functioning. The FB group sounds wonderful but I hesitate to do that as he has not informed his employer yet and is concerned for his job.

My husband started showing worrisome signs in July of 2020 when he had to get his license out because he could not remember our address. He was 52 at the time. There were other concerns he was having. Finally saw the Dr in early 2021 and had an MRI done but was told no significant findings.

A neurologist was the next step but he put it off until 2022. They had him do a sleep study and he had mild sleep apnea so tried a cpap but that didn't help. Had neuropsychological testing done and they suggested another scan and recommended a different neurologist.

The new neurologist diagnosed DH with PCA in May of 2023. He still does pretty good on most things. His biggest issues are simple math, typing and using tools. We just bought a house and he did a lot of painting and his cutting in is still meticulous.

For his typing, we got him a high
contrast keyboard with yellow keys and bold, black lettering. That has helped.

We have been arguing a lot lately with
the stress from this move and getting
the other house ready to sell. It's been a
long haul and probably a bad move but
we had a lot of stairs at the other house and my 88 year old mom lives with us so
we needed a ranch for her now and his
future.

That is it for now. Sorry for going on, just looking to connect