PCA. Posterior cortical apathy

Discussion in 'Younger people with dementia and their carers' started by Jsav, Jan 6, 2015.

  1. Jsav

    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
     
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,662
    Salford
    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
     
  3. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    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
     
  4. briana

    briana Registered User

    May 23, 2011
    60
    south wales
    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
     
  5. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
  6. polly1

    polly1 Registered User

    Dec 8, 2011
    306
    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.
     
  7. Jsav

    Jsav Registered User

    Jan 6, 2015
    2
    Thankyou for your reply
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.