• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

PCA. Posterior cortical apathy

Jsav

Registered User
Jan 6, 2015
2
I have a ? Diogonoses from my neurologist I have been having test after test for the last five years I am 47 years old and I feel like no one understands me I am now being put on treatment for alzamas is there anyone else out there with the same sort of thing please
 

Kevinl

Registered User
Aug 24, 2013
4,771
Salford
I have a ? Diogonoses from my neurologist I have been having test after test for the last five years I am 47 years old and I feel like no one understands me I am now being put on treatment for alzamas is there anyone else out there with the same sort of thing please
Hi Jsav, welcome to the site
The last word should ne "atrophy" don't you just love spell checkers. Out of my experience I'm afraid but there is a fact sheet here.
K
http://www.alz.org/dementia/posterior-cortical-atrophy.asp
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Hello jsav and welcome to TP :)

I'm afraid I don't have experience of posterior cortical atrophy either. However, I am glad that you seem to be getting a good amount of attention from the neurologist ( though sorry you need it!) Also the fact sheet mentioned by Kevinl looks good.

I hope someone comes along soon with direct experience for you.

All the best

Lindy xx
 

briana

Registered User
May 23, 2011
60
south wales
good morning

I have a ? Diogonoses from my neurologist I have been having test after test for the last five years I am 47 years old and I feel like no one understands me I am now being put on treatment for alzamas is there anyone else out there with the same sort of thing please
morning Jsav
My husband was also diagnosed with atrophy ( graded significant,) he was 45 at the time. It was a huge shock! I knew there was something wrong, and after a " crisis " (which was not the greatest) he was taken into hospital and assessed by a team. thereafter everybody came aboard to help, cpn, consultants (a life saver) nurses gp, social workers. Of all im very grateful. The worse thing is I was told by the consultant that no medication can stop this disease, they can just medicate the symptoms. Hubby is now on a cocktail of different drugs which are tweeked every so often,
I am sure now you have a diagnosis, support is around you, ask your hospital consultant to arrange for a cpn to call to your home to explain the medication, symptoms etc that you are likely to need/require. Also the local mental health teams can arrange social services/ carers etc, it is a bit of a maze when you first get the diagnosis not knowing where to turn/ who to ask etc.
At least the question is out of the way and you know. It will take time coming to terms with it, it does me 4 years on, and still now it grabs me and I cant believe this is happening. hope you get the support you need. This forum is also very good for a chat and to browse. best of luck. bb
 

polly1

Registered User
Dec 8, 2011
307
Hampshire
So sorry JSAV to hear this.
My husband was diagnosed 3 years ago with PCA, aged 57. As Tre has mentioned there is help out there. There is also a 'closed' Facebook group which you can apply to become a member of. That too, has invaluable help and support from members not just in the UK but worldwide.
 

Jsav

Registered User
Jan 6, 2015
2
I have a ? Diogonoses from my neurologist I have been having test after test for the last five years I am 47 years old and I feel like no one understands me I am now being put on treatment for alzamas is there anyone else out there with the same sort of thing please
Thankyou for your reply