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
    199
    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
    3,871
    Male
    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
    345
    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
    7,975
    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
    199
    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
    5,114
    Female
    Scotland
    Jeannie what glorious flowers. A beautiful consolation in a very trying illness. Best wishes.
     
  7. canary

    canary Registered User

    Feb 25, 2014
    7,975
    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
    272
    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
    337
    Beautiful flowers @Jeanie 73 . Wishing you and your daughter lots of love and luck xx
     
  11. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    199
    N Lincolnshire
     
  12. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    199
    N Lincolnshire
    Sorry I have not seen this before now❤️
    I go on Facebook and someone put up a site that deals with and knows about PCA and I joined a forum on FB.
    Written by people and carers that know of and about PCA. It described my symptoms exactly.
    Told my person from memory clinic she had not heard of it, but mentioned it to consultants there and only one was aware of it,but knew nothing about it!
    When I get different things happen I go on forum and it’s reassuring when they say yes that’s ok it happens with PCA.
    Recently I experienced seeing people very real people, but knew it must be my PCA went on forum and explained and sure enough it was part of it.
    America seems more clued up than we do i’M afraid!
    Perception of space is a real problem and not able too see things directly in front of us another.
    Persistent tiredness bad for a while now and less able to recall things I want too tell daughter about, just can’t remember!.
    I despair because no one here seems too want to learn about it ‘m sure I can’t be the onLy one round here that has it.
    Best of luck perhaps where you are will be better informed❤️❤️❤️
     
  13. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    199
    N Lincolnshire
     
  14. Haverton

    Haverton Registered User

    Sep 12, 2016
    59
    Essex
    Hi jeanie sorry to learn of your troubles. You are real trooper and i hope i am this way when 'further down' the road'. I am not sure what PCA is but i do find it difficult to see things near to me. When i read i can't follow the next sentence after the one i have just read. In other words thing become 'mushed up'. On the other hand, I can follow the story better when using my kindle. Why this is so remains a mystery to me. Perhaps members can give reason for this.

    Take Care
     
  15. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    199
    N Lincolnshire
    So good too see you Haverton often wonder how you are!
    Symptoms of PCA Posterial cortisol atrophy put simply it means that the part of your brain that deals with sight is dying. This does not mean you will go blind although some are, but sight is distorted, distance is difficult too judge, I often look down and my wrists are stick thin my hands are the size of a child’s. The brain is always trying to compensate, but obviously can’t so hence the muddled sight.
    It’s not all bad news as my ability to recognise family and friends will probably stay with me longer than it would if I just had Alzheimer’s. Having said that i’m At a stage where I do not always remember family and friends now, have difficulty recalling what I want to tell Joy, but I am still able too garden although not able to remember otherwise familiar plants and flowers.
    There is only about fifteen hundred people on the PCA forum world wide! And very few of us who can still describe what is happening to us. To me it seems such a waste too not use this information whilst it’s there and available. So frustrating although I do post on forum each time something different happens to me and it seems to help some carers and helps understand more.
    Love too you Haverton and all who are on this journey, whatever type you have❤️❤️❤️
     

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