Living with Posterior Cortical Atrophy (PCA)

Discussion in 'Younger people with dementia and their carers' started by graham doggett, Jun 27, 2008.

  1. graham doggett

    graham doggett Registered User

    Jun 13, 2008
    2
    Herts
    As someone who has lived with PCA for some years now, I have developed a number of strategies to help me in various circumstances; however I would be grateful if anyone can suggest tips for things I cannot cope with at the moment. For example:

    I cannot read my own handwriting (or anyone else's for that matter) and find reading text in newspapers or on television near impossible. Although I can read some print very slowly - when it comes to reading words to church hymns (especially if it is necessary to move about the page looking for a repeating chorus/refrain) I am completely unable to keep up with the pace of everyone else.
    Fortunately I have access (via our local church as well as social services) to readers on a weekly basis but it would be good if there were ways to cope with some of these problems by myself.

    Dressing myself is often a problem - i.e. putting things on inside out or upside down, which sleeve is which etc: I have found that little pieces of coloured fabric attached to specific parts of garments can help with orientation but unless there is a great deal of light available it can be very hard to even distinguish which articles of clothing are which.

    Recognising faces is difficult. So far I have been in the habit of saying who I am whenever I meet up with someone and as soon as they start talking I am likely to recognise a voice if it is known to me.

    Modern signage causes great trouble - especially when looking for public toilets: the typefaces that tend to be used nowadays may be very pretty but are indecipherable for someone like me.

    Generally I have found that joining groups of people who are blind/partially sighted (e.g. at the library) can be useful for swapping experiences and strategies - though as I'm sure people reading these forum pages can appreciate, visual problems associated with dementia are not the same as problems with one's eyesight per se; I would very much welcome any comments or advice from this community.
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Graham

    Sorry I can be of no help....but wanted to thank you for giving

    us some insight into the difficulties you experience. I dont know

    if we have other members with PCA (or carers).....but hopefully

    someone will be along with some ideas for you.

    Love Helen
     
  3. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Welcome Graham

    I cannot offer help, or advice.
    But welcome to TP.

    Barb & Ron XX
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,642
    Kent
    Hello Graham

    I know nothing about Posterior Cortical Atrophy (PCA) but have worked with children with Communication problems caused by Atrophy and/or Dyslexia.

    This is an absolute shot in the dark, but have you tried to read using a tinted lens. It has been found to be effective with some people.

    When you are dressing, if you feel for the seams, it might help you to know whether or not the garment is inside out.

    Take care xx
     
  5. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hi Graham

    I'm interested to read your post, though not because I have any contact with or knowledge of PCA. I look after my Mum who has Alzheimer's Disease, but she also has increasingly poor vision due to Macular Degeneration in both eyes. Almost all useful vision of her right eye has gone (apart from light/shade) & the left one is going too.
    Of course, this increases the dangers of her missing her footing and falling (and also the possibility of her walking into the Gents loo :eek:, as she did once last year when insisting on being independent! :D)

    I am grateful to read your strategies for coping as the problems you experience are similar to those Mum is struggling with, and which I am trying to find ways around. Unfortunately the 'inability to learn anything new' which comes with dementia complicates attempts to compensate for her failing eyesight, as substitute activities like talking books are limited by her inability to operate unfamiliar players, and to a degree by limited attention span.

    I'm off to look for an on-line PCA Support Group if there is one, to poach ideas! Thank you for making me aware of the condition and I hope you glean some useful information on this site.
     
  6. C Webber

    C Webber Registered User

    Feb 5, 2009
    1
    Essex
    Living with PCA

    Dear Graham
    My father had PCA diagnosed 2yrs ago (I think he's had it for about 5 yrs) and has the very same symptoms you are experiencing.
    Did you watch the Terry Pratchett documentary on BBC2 last night? He too has PCA although it was interesting that he was referring to it as Alzheimers. I suppose it is a form of Alzheimers which effects the back of the brain and therefore ones sight rather than primarily ones memory. I keep telling my father (who is 73 yrs) that it could be worse and that he should try and focus on the things he can do and not the things he can't. His father had Alzheimers for 15 years so he knows what it could be like.
    He can't write or read and struggles to dial numbers on the telephone. He trips on pavements constantly as his close vision is very poor. However, anything in the distance he can see clearly so he can spot where the car is in a car park quicker than Mum!
    He goes to a memory Clinic at Adenbrooks Hospital, in Cambridge every 6 months They are very supportive but you tend to be left to get on with it on a day to day basis. I wish there was a help group near by like the one Terry Pratchett visited, for Dad to meet other sufferers of PCA.
    I hope this reply helps a little.
    Clare Webber
     
  7. ella24

    ella24 Registered User

    Nov 9, 2008
    1,024
    South Coast UK
    Hi Clare (and Graham)

    Graham was on the programme last night!

    Graham (I think) was the lovely chap and his wife that Terry went for dinner with. I hope I'm right!

    I'm not sure if this might help but my grandfather had Macular Degeneration and Parkinsons, and he found that by putting a drawn line or ruler under enlarged text it helped him to keep on the line he was trying to read. We often were called upon to photocopy and enlarge text for him, which is much easier with computers now. We also tried highlighting lines of text in varying colours which had some success too.

    My grandfather also used to have 'listening newspapers' - audio versions of newspapers on a weekly basis.

    For books, he had a special 'book player' through the listening book charity. Here is a link to the site http://www.listening-books.org.uk/index.htm

    I hope this is useful

    e
     
  8. Sam Iam

    Sam Iam Registered User

    Sep 29, 2008
    3,151
    WEST OF THE MOON
    Hi Graham & Clare,
    I dont have any knowledge of PCA but appreciate people taking time to educate me about it as I feel I take reading,writing etc for granted and dont realise the difficulties that this form of dementia brings. Thankyou xx
     
  9. makalu

    makalu Registered User

    Nov 2, 2008
    72
    West Sussex
    I assume that the majority of people would never know what PCA or any more specific types of dementia are which may be why Terry was referring to it as Altzheimers. What an enlightening programme - I really wished that me and my mum could have joined in the group that Terry went too there were a lot of younger people there and Graham, how very brave of you to take part. I watched with great interest, thinking how long ago it was since my dad was showing similar symptoms, and how far progressed he is now in such a short space of time (he has PIcks Disease which affects the front and side of the brain). I shall watch with interest next week. The acceptance that you all had of your condition was something my dad could never admit too, which made it so much harder to cope with.
     
  10. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    Bearing in mind as Graham said,PCA,and Spatial awareness is not the same as bad eyesight ,large print was actualy more distorted than normal size for my husband , whom i believe had this form of AD,but underlining did seem to help , we used a red card to hold under each read line ,and moved it down the page , we also used red sticky tape on various objects , like the opening on the vidio player ,and i painted the rocker button red on the tv remote ,this did work for a reasonable lenght of time ,also i used a strip of red tape at eye level on the patio windows and all full lenght mirror`s,to stop him walking into them ,i always took a roll of this tape on holidays for the same purpose ,it was an never ending challenge to become ever more inventive as the goalposts kept moving ,
    best wishes to you Graham,
    Angela.
     
  11. dandare

    dandare Registered User

    May 3, 2009
    4
    Manchester
    Am writing this with my husband who was diagnosed with early onset alzhiemer's 2 years ago. Then further tests at Hope hospital 18 months ago said it was PCA. We recognise a lot of these difficulties in every day living.
     
  12. Chrissyan

    Chrissyan Registered User

    Aug 9, 2007
    570
    N E England
    [​IMG] Welcome to the forum both of you. I am sorry for your diagnosis, hopefully you will be able to get lots of advice on here. :) Just a thought, but why don't you start your own thread in the main forum telling us a bit about yourselves?
     
  13. jimwearing

    jimwearing Registered User

    Jul 4, 2010
    1
    berkshire
    #13 jimwearing, Jul 4, 2010
    Last edited by a moderator: Jul 4, 2010
    PCA support group website

    there is a support group - draft website available at http://pcasupport.codev.co.uk/ (Moderator note: edited to remove email addresses.)
     
  14. Jo1958

    Jo1958 Registered User

    Mar 31, 2010
    3,724
    Yorkshire
    Jim, hello
    Thank you very much for posting details of this website, it looks good and has interesting content, much appreciated.
    Best wishes, Jo
     

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