Alzheimer’s and PCA

Discussion in 'I have dementia' started by Jeanie 73, Jun 4, 2018.

  1. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    192
    N Lincolnshire
    Whilst I know and have experienced some of the effects of PCA last Saturday I actually cried when using my iPad I looked at my hands and they were minuscule. I don’t know why it affected me more than when I look and my wrists look almost as thin as pencils ✏️ as they do at the moment! It is such a weird disease, but I thought I was managing reasonably well,but not so well at the moment. I feel afraid uncertain and tearful.
    I no longer walk, I shuffle and have had a few bad falls although nothing broken, except my spirit perhaps!
    There is only myself and my daughter and I don’t want to burden her anymore than I have to.❤️
    Have too try and pick myself up, but difficult at the moment ❤️
     
  2. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    2,326
    Male
    N Ireland
    Hello @Jeanie 73, I'm sorry to read that you are having a hard time at the moment. At least we all have TP where we can talk about our fears.

    The visual effects of PCA must be so unusual. I'm sure your daughter would mind it less if you spoke to her about this than if you stay silent and have a more debilitating fall. If you find you can't speak to your daughter don't forget that there is a help line that you can call and the details are as follows
    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm

    Apart from that, have you seen the AS Factsheet, which mentions PCA and gives details of a contact for support services for the rare types of dementia. In case you haven't seen it, here's a link https://www.alzheimers.org.uk/sites...nloads/factsheet_rarer_causes_of_dementia.pdf
     
  3. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    352
    Thank you so much for sharing that on TP. I have read a little about PCA and believe that University College London have ongoing research into this particular area of Alzheimer's. I am sure this must be at times extremely trying for you, as I understand it, one retains an awareness which is often denied in Alzheimer's, i.e. memory loss. I do hope that there are others able to contribute with regard to PCA and post on TP to afford a greater awareness and insight.

    With warmest wishes.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    6,668
    Female
    South coast
    ((((hugs))))) @Jeanie 73
    Im sure you are aware that things appearing to change in size is typical of PCA - it is one of several visual and spacial problems, but it must be distressing
     
  5. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    192
    N Lincolnshire
    4FF4975B-E54C-474C-A819-4A5FEAD37DE0.jpeg 91252262-B7E5-4058-AEA8-C30A93BE53F4.jpeg 1C7B6D59-3AF2-40A3-AB6E-E8895C26EFB7.jpeg 787DC8FE-5D77-4FD9-8C93-6E76A1592B37.jpeg Many thanks for replies, pleased to say feeling better today, Daughter and myself are very honest with each other and don’t hide anything from each other, no point!
    I mostly use a wheelchair now both indoors and out as my balance is poor.
    I will have a visit in July from memory clinic, but unfortunately no one had any real knowledge re PCA as they say they will learn from me!
    Yes it’s true that your memory on the whole is far better than it would be with just Alzheimer’s, but difficult too speak and remember words. Numbers are very confusing can’t hand write so use iPad too communicate via predictive text.
    I can still enjoy my garden, not good dead heading though!
     
  6. marionq

    marionq Registered User

    Apr 24, 2013
    4,611
    Female
    Scotland
    Jeannie what glorious flowers. A beautiful consolation in a very trying illness. Best wishes.
     
  7. canary

    canary Registered User

    Feb 25, 2014
    6,668
    Female
    South coast
    What a lovely garden you have
     
  8. Lima

    Lima New member

    Aug 9, 2018
    9
    Dear Jeanie,

    I wonder if you can help me? My best friend has PCA. It came on about 10 years ago and has been so difficult for her. She was a talented script writer and worked for the UN in France for 20 yrs.

    What I wanted to ask you was: how did you get the diagnosis? Did you attend the Royal Neurological hospital by any chance? I'd be so grateful for any information you can give me.

    With best wishes

    Lima
     
  9. Norfolk Cherry

    Norfolk Cherry Registered User

    Feb 17, 2018
    175
    Female
    @Jeanie 73 I love your beautiful flower photos. My mum and I get a lot of pleasure from growing flowers in pots in her back yard, as well as the many outings to our local garden centre. It certainly helps focus on living in the moment, which is all any of us actually has! Wishing you all the best.
     
  10. Cazzita

    Cazzita Registered User

    May 12, 2018
    160
    Beautiful flowers @Jeanie 73 . Wishing you and your daughter lots of love and luck xx
     

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