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
PCA. Posterior cortical apathy
- Thread starter Jsav
- Start date
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
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
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
good morning
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
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
My husband has pca too. Are you aware of the excellent support group?Here is the link
http://www.ucl.ac.uk/drc/pcasupport
Tre
http://www.ucl.ac.uk/drc/pcasupport
Tre
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.
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.
