Posterior Cortical Atrophy

[Goody3253]

I'm new to this site. My friend was eventually diagnosed with PCA a few years ago after exhibiting symptoms for several years before that. None of the regular services seem to cater for her needs and even the visit to the Memory Clinic isn't very helpful as large parts of the questionnaire requires visual skills. My friends memory isn't bad, her problems are with her sight, language and coordination. Eating , washing, dressing and going to the toilet are really difficult for her. I'd love to hear how other carers help their loved ones with P C A.

 

[tre]

Hello Goody,
how lovely that you want to support your friend. My husband David has PCA and I have only just logged on today as we have been to the PCA support group meeting at University College in London. I do not know if you or your friend is aware of the support group but if not try looking at the web site pcasupport.ucl.ac.uk and you will find a wealth of information. At todays meeting we had new members from Newton Abbott in Devon and Gloucestershire. The next meeting is to be confirmed but provisionally booked for 26 October and i would really recommend you come if possible.
However,someone today was skyped into the meeting from Australia and I have also learned today there is a PCA group on facebook. I am not a facebook person but just in case you are.
With all good wishes,
Tre

 

[Goody3253]

Hi Tre,
Thanks for replying so speedily. I will look at the website you mentioned. I would be interested to attend one of the meetings as I've never met anyone who has experience of PCA. It was so helpful when Terry Prachett spoke out about his diagnosis, his experience was so similar to my friends. So few people seem to know anything about that particular type of dementia. I find it really difficult when we go to unrelated hospital appointments trying to explain to staff what her problem is and how it affects her. I realise that she doesn't look "blind" to others, she was given a white stick but couldn't cope with it. I hate having to explain to people that she has dementia as it feels so demeaning but sometimes its the only way especially when we are out at the shops and people she used to know cannot understand why she doesn't recognise them.
Its such a heartbreaking combination of symptoms. She had to be admitted to temporary care last year when her husband had a stroke and it was a nightmare. She couldn't find her way about without help and couldn't tell who was staff and who was a resident. She is so aware of her problems and gets so frustrated with her word finding difficulties and having to depend on others.
Has your husband been diagnosed long? How do you manage? I have tried to persuade my friends husband to accept some help with his wife's personal care but he has turned it down, even though its clearly tiring for him with his own health problems.
Sorry to go on, don't want to be a bore! Thanks for responding.

 

[tre]

Hi Tre,
Thanks for replying so speedily. I will look at the website you mentioned. I would be interested to attend one of the meetings as I've never met anyone who has experience of PCA. It was so helpful when Terry Prachett spoke out about his diagnosis, his experience was so similar to my friends. So few people seem to know anything about that particular type of dementia. I find it really difficult when we go to unrelated hospital appointments trying to explain to staff what her problem is and how it affects her. I realise that she doesn't look "blind" to others, she was given a white stick but couldn't cope with it. I hate having to explain to people that she has dementia as it feels so demeaning but sometimes its the only way especially when we are out at the shops and people she used to know cannot understand why she doesn't recognise them.
Its such a heartbreaking combination of symptoms. She had to be admitted to temporary care last year when her husband had a stroke and it was a nightmare. She couldn't find her way about without help and couldn't tell who was staff and who was a resident. She is so aware of her problems and gets so frustrated with her word finding difficulties and having to depend on others.
Has your husband been diagnosed long? How do you manage? I have tried to persuade my friends husband to accept some help with his wife's personal care but he has turned it down, even though its clearly tiring for him with his own health problems.
Sorry to go on, don't want to be a bore! Thanks for responding.

Goody,sorry not to have come back before.My husband was diagnosed in January 2008 when he was 67. Looking back he had probably had it for at least four years at that point. He was always a really good driver and had never had an accident until in 2003 he had three in the one year. We trailed around opticians and even an eye consultant did not pick it up but in August 2007 we got a second opinion from another eye consultant who said there was definitely a problem. He ruled out all the eye stuff and referred us on to Neurology and luckily the chap we saw had seen PCA before. David is now registered blind but he could not use a white stick either. he'd probably fall over it. First things we noticed were other than the driving errors things like his not being able to get in and out of the car easily, difficulties with dressing himself, difficulty with locating his cup on the table when drinking, only spreading half the bread- he did not seem to see the other half, unable to map read for me when I took over all the driving (again something he had been really good at). Difficulty reading, especially the newspaper headlines although he could read the smaller print if spaced right. This was one of the things discussed at the support group meeting. One patient was commuting to work every day by train and suddenly noticed he could not read the headlines on his paper although he could read the smaller text. He looked down the carriage and bizarrly discovered he could read the headlines on other peoples papers which were further away from him. Unable to use household appliances such as cooker or microwave. I put coloured dots on the controls and he was able to continue to use the radio and play CDs but now he cannot do that. Unable to read a clock. Difficulties remembering words and from being able in the beginning to do short train or bus journeys alone then losing that skill. Originally he could walk the 5min route up to our local shops in the village but after a while he started to lose confidence that he could find his way home so stopped going out alone. He also has gradually lost the skill to hold a conversation that he used to have which can be a bit lonely.
It is good that you are keeping contact with your friend. I have two or three real friends who still make the effort but some people seem very uncomfortable with dementia and rather than get it wrong say nothing, whereas others speak to me as if he is not there which I hate.
Hope you have found the support group web site helpful
Tre

 

[angela.robinson]

Tre`s story could have been written by me ,except my Jim was only 55 when he was wrongly diagnosed as having had a stroke at some time , i found this difficult to believe as he had never been ill in all our years together. he was told to give up work and driving straight away ,with hindsight i think his problems started 2 yrs earlier than this ,however as his symptoms got worst. i asked for further scans,and was then told it was Alzheimers....still it seemed strange to me . him not having memory loss as i could see it ,i had never heard of PCA untill Terry Pratchets story was told , Jim died at the young age of 63,still being treated for Alzheimers ...the only difference in his condition ,compared to others i have read of is he never had problems with speech,well not untill his final weeks ,

 

[tre]

From attending the support group I can tell you that not all sufferers have problems with their words. In fact I would say the majority I have met via the group do not. I am really sorry your husband did not get the correct diagnosis Angela. I feel sure my mum who died last year, diagnosed with vascular dementia actually had fronto temporal dementia although she may have had vascular dementia as well. The only thing to take comfort from is there is no treatment for PCA specifically so your husband did not miss out. When I found the fronto temporal dementia description I hardly dared look to see what treatments were offered in case something could have been done for mum and it had not been given , but this was the same with no specific treatment listed.
Your husband was very young too but there was someone at the support group whose husband was diagnosed in his forties and there are several in their fifties or sixties.
Tre

 

[tobermory]

PCA diagnosis

I just wondered if anyone had an opinion on what would the benefits be in getting a diagnosis of PCA? Mum's diagnosis is currently Vascular Dementia with possible crossover to Alzheimers with atrophy in the back part of the brain. She shows many symptoms of PCA, unbalanced, dizzy, no peripheral vision, cannot read clocks, use phone etc.

On one side I am torn between leaving no stone unturned but the other side of me asks what is the point and what would we gain by knowing it's PCA when nothing can be done?

Anyone?

 

[angela.robinson]

i dont think there would have been any benefit to me or my husband at that time ,over 14 yrs ago
in knowing if it was PCA rather than Alzheimers,as there does not seem to be any treatment for it ,and i dont think Aricept would have been subscribed ...although i think Aricept was of benefit for my husband , in that i believed it slowed things down ,.but maybe it would be a help to others in the future ,maybe its not as rare as its thought to be . the more people thats known to have this type ,the more chance off research being done ,there must be ,a huge percent of people wrongly diagnosed.

 

[tobermory]

yes there must be Angela. I will have to think whether getting mum referred again and taking her up town and putting her through all those tests would be worth anything for her, possibly not.