Posterior Cortical Atrophy

Gmom28

My husband was diagnosed in 2017 at age 60 with Alzheimer's. He since has been diagnosed with posterior Cortical Atrophy. This is a form of Alzheimer's that isn't common at all. When I mention this to anyone no one seems to have heard of it. This makes it very hard for me to get support. His vision is worsening along with the "normal" Alzheimer's decline. Any one deal with this or am I really alone?

French

I know one woman who has that atrophy. It is also called benson syndrome. She is 57 and began with vision issues. But now she is like my partner, she also has memory, language and apraxia issues. It seems to be a rare form of AD

Gmom28

My DH has been experiencing severe vision issues lately. His Neuro-ophthalmologist doesn't seem to think anything can be done to help him anymore. This is very frustrating for both of us.

AndreeAndree

I was first diagnosed with Early Onset Alzheimer's and then about 6 months ago with Posterior Cortical Atrophy.  There is a support group on Facebook called Posterior Cortical Atrophy Awareness.  

There is also a website for rare dementia support called Rare Dementia Support.  

I can't share links here, but you can send me a message if you can't find them. I'm sorry for your husband, me, my husband, you, my family and your family.  This terrible terrible disease effects everyone involved.  Taking one day at a time and living in the "now" helps me nd my family somewhat.

Gmom28

That is the same information I received from our Nero-ophthalmologist, very frustrating.

Gmom28

Thank you so much I am checking the information today.