Mum has PCA [Benson's Syndrome]

Leukeleu

Registered User
Feb 26, 2010
5
Hello,

I'm new to this forum and to the whole world of Dementia really. Well where to start, these things are always such a long story....

My Mum was diagnosed early last year with Posterior Cortical Atrophy which was I believe years ago called Visual Variant Alzheimer's. She also has problems with her speech now, forgetting the vital word in a sentence. Her memory is fine although there are a few short term memory issues creeping in.

She has just had new scans done and these indicate significant degradation in the areas of the brain affected by the PCA but no degradation in the area associated with Alzheimer's just yet but we've been told this may or may not happen in the future.

Its a very rare disease and her hospital only have about 4 other people with it. The trouble is she is based in France [as am I] and English language support is few and far between so it's just me and my Dad looking out for her and beginning to have an increased role in her care. I am fairly converse in French but my Mum who lives with my Dad about 10 kms from me cannot speak a word as the symptoms started coming out just as they arrived here about 8 years ago and she found it difficult. She wouldn't think of going back to the UK and the clinical care here is excellent and she has a great Consultant and GP who are fluent in English.

It's a long shot but does anyone know of any English speaking support groups in France at all?

Just wanted to say hello, it seems we are not so alone as we thought we were. Are there any other PCA sufferers and/or carers here?

Best wishes to everyone,
Kirsty
 

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
Hi Kirsty, welcome to Talking Point (TP), and I hope you will find useful support here. There is an AS Factsheet on PCA here - http://www.alzheimers.org.uk/site/scripts/services_info.php?serviceID=103, but you may already know what's there.

If you go up-screen to the green banner-line across the page, click on the SEARCH button, & input Posterior Cortical Atrophy that will take you to other threads on the subject. *PCA* also works, different threads.

I hsve no experience of this variant myself, but give it 24 hours & I'm sure you will get further responses.

Also, there is another recent thread here from someone with a relative in France, with an informative reply from Michael E, who lives in France. http://forum.alzheimers.org.uk/showthread.php?t=21769&highlight=france

Best wishes
 
Last edited:

KatherineW

Volunteer Moderator
Oct 2, 2007
12,654
London
Hi Kirsty

Welcome to Talking Point. I'm sorry to hear about your mum's diagnosis.

It's a long shot but does anyone know of any English speaking support groups in France at all?
If you haven't done so already, I'd suggest making contact with the Alzheimer's support organisation in France, to see what support they may be able to offer:

France Alzheimer et Maladies Apparentées
21 Boulevard Montmartre
75002 Paris
France
Tel: +33 1 42 97 52 41
Fax: +33 1 42 96 04 70
Email: contact@francealzheimer.org
Web: www.francealzheimer.com

You might also find it helpful to use a tool such as Google Translate, which will translate their website into english for you.

Best wishes,

Katherine
 

Leukeleu

Registered User
Feb 26, 2010
5
Hello,

Thanks for the welcome and the initial advice. I had googled PCA to find as much as I could about it, which isn't alot.

Thanks for the google translate tip, I usually get by but sometimes if I'm feeling lazy or tired, that will be a useful tool to have. I usually find my French is rubbish when i'm tired, with two little ones, thats usually most of the time :)

Lynne, I had just searched PCA as you suggested, just after I did my post. Found a couple of threads to read and the symptoms are just the same. Just wondered if anyone has had the speech problems aswell?
Katherine, The Alzheimer France people in our area are supposed to be contacting us with regard to having a 'home help' type person make contact with my Mum one afternoon a week for a cup of tea together to start with. There is supposed to be and English speaking carer which will be wonderful.
The trouble is my Mum is a very private person and I don't know if this will be well received.

It's all a trial for PCA but my Mum is on the Excelon Patch and also Ebixa tablets to try to stall the symptoms but she seems to have taken a fast downhill spurt this past 6 months. Thanks to the fantastic French healthcare, the cost of the medication is covered by the social part of the healthcare here so they don't have to pay [at source anyway].

Thanks again and I look forward to hearing from anyone who cares to contribute.

Kirsty
 

amy2512

Registered User
Dec 11, 2007
51
Cambridgeshire
Hi Kirsty,

Welcome to TP. I am very sorry to hear about your Mum.

My mum has PCA and I am her carer, Mum is only 51 so this came as a massive shock to all when she started to get unwell. If I can help in anyway or answer any questions you may have please feel free to ask. I too couldn't find much info on PCA to begin with but am unfortunately becoming a very reluctant expert in it now, so will help in anyway that I can.

All the best,

Amy
 

Leukeleu

Registered User
Feb 26, 2010
5
Hi Amy,

Sorry to hear about your Mum, so young aswell. My Mum is 60 but has been showing symptoms for some time now.

She has absolutely no initiative to do anything in the house, having to be prompted all the time and starts little jobs but never finishes anything. She has very little motivation at all and when I queried this during her last Consultants appointment, they said that was quite normal for any brain disease patient.
Do you find this is the case with your Mum?

I think sometimes my Mum can be her own worst enemy and wonder what is 'disease' and what is 'giving up' because its too hard to try?

I've read that this can lead to a kind of total blindness? Is this true? If it is it's something I was unaware of. It's all so horrible and sad.

Nice to hear from you Amy,

Kirsty
 

amy2512

Registered User
Dec 11, 2007
51
Cambridgeshire
Hi Kirsty,

My Mum too when through a period of seemingly little motivation, I think it was a combination of things, the main thing being everything just became SUCH an effort for her and sometimes it was easier to sit and seemingly do nothing than summon the energy and effort involved to do things. It is hard to find things that can occupy my Mum as she can no longer see to read or write, the tv is on but she can't really follow it, she can't sort things or look at things very well, eg photos. It is hard but maybe you will find something that your Mum enjoys doing, or this stage will pass.

Mum too starts little things around the house but never finishes them, she gets distracted and wanders off and then forgets what she was doing.

I've read that this can lead to a kind of total blindness? Is this true? If it is it's something I was unaware of. It's all so horrible and sad.

Kirsty
Yes this is true, sorry :( Is your Mum showing any symptoms of this yet? My Mum is and it is extremely difficult, it's not that she can't see, as in her eyes work fine it's getting the message to the brain that's gone wrong. She can be staring at her handbag asking 'where's my bag?', she reaches out for things and mis-reaches, can try several times to pick up an object. I've put big white stickers on the 'on' button on her tv and stereo but these aren't helping much as again it's not her eyes, it's her brain. It's so complicated to explain! She has started to mis-judge steps and coming down the stairs is sometimes difficult for her as she has a tendancy to not see the bottom step. She can no longer turn the oven on as she can't see the knobs or what hob they relate to. Yet it's not as simple as that, as she has no comprehension that she can't do these things and sometimes she can do them with no problem. It is totally baffling and almost impossible to help her sometimes. Things that she can't do she has excuses for and it is never because of her alzheimers, it's often the room is too dark, I guess this is how things must appear to her sometimes.

I have been told that overtime yes it will be like she has become blind, things we have been told to look out for and be extra vigilant about are things like pouring hot water out of the kettle and mis-seeing the cup and pouring it over her hand, not seeing the stairs and falling down them, not seeing things on the floor and walking into them. Just yesterday she almost kicked my 9 month old son in the head as she tried to walk round him sitting on the floor, she was up walking in a heartbeat and I didn't have time to grab him and her foot swang but a hairsbreath from his head. Yet had I jumped up and grabbed him she would have been so offended and hurt that I thought she'd accidently kick him...

Sorry I've gone on a bit :eek: I hope it's helped somewhat to read about someone elses experience of PCA, I feel so alone sometimes as we don't know anyone else who has this and even the experts who are trying to help Mum seem baffled by it sometimes. If I can help in anyway I'm here...

Amy
 

Leukeleu

Registered User
Feb 26, 2010
5
Hello,

I understand everything you are saying Amy, my Mum is exactly the same.

I want to reply in full but I live in France and we were hit by the bad storms at the weekend and I have no phone or internet access at the moment.

I'm struggling with wifi access as and when I can find it. Will reply when we are up and running again.

Thanks, Kirsty
 

worried

Registered User
Oct 16, 2008
3
Hello Everyone

My mother is 79 years old and has been very fit and active always. She was diagnosed with Alzheimer's about four years ago, but since then we have done plenty of googling and discovered that she fits the description of PCA exactly. I spoke to her doctor the other day and mentioned this but he commented that there's little reason to think that knowing an exact diagnosis would be of help - is this true?

First of all Mum went to the optician's, as she was convinced she needed new glasses. She then realised that she couldn't read or write, tie shoe laces, follow a recipe, see the numbers on the cooker knob, put her purse in her handbag, open the door with a key, put a cup on a saucer, set the table, dress and undress, fasten her seat belt. In recent months I feel she has been getting worse. She slipped down the last couple of stairs and broke her wrist. She doesn't realise that she has a left arm at all and, if you ask her where it is, she has absolutely no idea and might point at the table or a cup. She tries to do everything one-handed. My father looks after her wonderfully, but gets very tired and sad. I feel Mum is depressed, as she knows she has problems (although she's not exactly sure what they are or how they affect her or anyone else) and says things like 'I don't want to be here any more. I can't believe I'm in this state.' It's awful when she is this sad and gets very weepy. WE have managed to get social services on side and they have been marvellous, organising a carer morning and evening to help with dressing and undressing. Although she tried aricept and galantamine, nothing agreed with her and so she takes no drugs at all now.

I live four hours' drive from Mum and Dad, but keep going to stay for the week to give them a break. I can see that at some point Dad will crack under the strain. A care home might be the answer, but he is putting that off until the last possible moment and Mum has a morbid fear of going into somewhere and being there for years in a state of limbo.

Sorry to ramble, but it's so sad and so difficult to know what to do to help.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,717
Kent
there's little reason to think that knowing an exact diagnosis would be of help - is this true?
It`s partly true I`m sure, because as yet there is little in the way of specific treatment for any of the dementias apart from a few drugs which might or might not delay progression or mask symptoms. Even so, for some people these drugs are a godsend, while for others they are ineffective.

On the other hand some of the dementia have specific characteristics, eg. early loss of language or challenging behaviour, so it might be helpful to know what the future may hold.

I do know people like a label. It seems to give security. `Dementia` is global , but specifics are more credible.

The most important thing in my opinion is to help your dad get as much support as possible.
 

PostTenebrasLux

Registered User
Mar 16, 2010
768
London & Oxford
Pca

Hello Kirsty, Amy, Worried and Granny G,

This is the first thread I have come across since joining today, looking specifically to connect with carers of PCA sufferers.

Incidentally Kirsty, I am fluent in French should you ever need help.

I am looking after my now 65 year old cousin who has been suffering with diagnosed PCA for approx. 10 years now, so, we are quite far down the line...

Kirsty, you may also wish to get in touch with the department of Dr Bernard Croisile in Lyon - he specialises in PCA

http://www.chu-lyon.fr/internet/chu/etablissements/neuro/neuro_soins_laboratoire_neuropsychologie.htm

The following link I find exceptionally good in explaining PCA to the general public and professional alike - I hope it can be of use to you: (also located in France).
http://www.orpha.net/data/patho/GB/uk-Benson.pdf

Best wishes ahead and I look forward to following your posts
Post Tenebras Lux
 

Leukeleu

Registered User
Feb 26, 2010
5
Hello all,

I'm finally back on line after 7 weeks of waiting for France Telecom to come and fix my line.

PostTenebrasLux:
I PM'd you before I read your post on here. Thanks for the links very interesting and I will find out a bit more about Dr Bernard Croisile and maybe contact him.
I want to know but am also quite scared of what 10 years down the line is line?
My Mum had a new brain scan and compared to 18 months ago, more significant degradation in two areas, the speech and congnative areas. The consultant said no degradation in the traditional Alzheimer area and the frontal lobe was compensating. She is going downhill though.
Fluent in French...I wish I was. Not doing to badly but some days I just feel so stupid like i'm never going to get it.

worried: Although my Mum has been given a clear PCA diagnosis, she is on Alzheimer drugs, Excelon Patch and Ebixa tablets. After an initial belief that they were doing something, it's not doing much now. What your Mum has does sound very much like PCA though, in my opinion.

Amy2512: I have little ones too, the youngest is 18 months and it is so hard to sometimes make situations safe whilst not offending my Mum. She cannot be left on her own with them as she just can't see dangers or react quick enough to his escapism and new found freedom. My 4 year old keeps telling my Mum to take care and be careful when she is doing jobs, hahaha bless.


Look forward to keeping in touch with all of you now my connection is up and running again.

Bestest, healthiest, wishes to you and yours,

Kirsty (leukeleu)
 

clog

Registered User
Oct 25, 2009
9
PCA / Benson's

This is a reply to 'worried'.

Hi,
I realise it is a little while since your post but I hope this may help.
I am involved with the care of somebody with PCA.
I recognise some of what you mention, even the effect of the hand disconnecting with the brain, in my PCA sufferer.
It is worth getting the right diagnosis, if anything just to put an end to you putting all the effort into finding what the true diagnosis is. We did just the same, we knew what the doctor's were saying didn't add up. You can then put your efforts into a different direction.
The drugs might be the same as Alzheimer's but the approach and the care is different.
In fact, some of the advice you get for Alzheimer's will be inappropriate for a person with PCA.
Regarding drugs, many people who don't get on with aricept or reminyl use the Exelon patch.
Ebixa is also another different drug, but can be taken in combination with Exelon. [But see your doctor or neuro-psychologist or neuro-psychiatrist].

Anyway, PostTenebrasLux has given you a very good link to the Bernard Croisile paper on Benson's. The Alzheimer's website also has a good factsheet and it mentions the support group at the Hospital for Nuerology..., Queens Sq. London. It may be worth you attending if it is too much for your mother or father, though you will find most sufferers are 50-70 years of age. Even if you go just the once, you'll see your mother's struggles replicated, and realise you are not alone.

The Salford Royal has a Cerebral Function Unit that has good information sheets on Apraxia and Aphasia (speech), here's the link: http://www.cerebralfunctionunit.co.uk/

Speakability charity also has useful leaflets to explain to your relatives etc, if your mother has difficulty with words. Link: http://www.speakability.org.uk/

And there are also a small number of people with PCA at RICE in Bath if your parents are in that part of the country. I know of one other person from Wiltshire who goes there.
Link: http://www.rice.org.uk/

Don't wait for your GP to write to anybody on your behalf, it is best to do the legwork yourself and get on the phone.
At RICE there is a Prof. Roy Jones and I think another doctor, Dr Gill Mann (I'm a bit hazy about the name).

All the best.
 

jsmith

Registered User
Aug 20, 2010
12
Mum has recently been diagnosed with PCA although I suspect symptoms started around 2005.

However I have a gut feeling there are multiple variants occurring at the same time, as while we've certainly experienced the spacial judgment / sight processing problems, there are also fairly bad memory recall problems (both short and long term) and increasing speech problems.

Anyone have experience with this kind of multiple symptom situation?

I will be finding out more in around 6 weeks when I have a follow up appointment at the National Institute for Neurology....

We are based in London and will be researching support groups and so on over the coming months so all links appreciated!
 

LuluH

Registered User
Nov 1, 2011
1
Aylesbury, UK
Reply to Worried

Hello Worried

My Mum too has been diagnosed with PCA. She is 80 years and had a very late diagnosis and is now (I can only assume) in the late stage of PCA. For several years we were constantly taking my Mum to see an opthalmic specialist (after having a cataract operation which did not help her failing sight). Each time the specialist said that there was nothing wrong with her eyes and we would ask if it could be something neural and were told 'very unlikely'. It wasn't until we instigated a private CAT scan that we learned about PCA. By the time of Mum's diagnosis (July 2011), her eyesight was very poor, her speech was very poor and her coordination was getting worse. Since then things have accelerated and a couple of weeks ago we had to make the painful decision to move her into a Nursing Home. She is finding it very difficult and has over the last few weeks become incontinent. The Manager at the home told us within the last 2 days that if he'd know how 'high dependency' she was he wouldn't have accepted her. The referral to the home was made from hospital (she had been there for 2 weeks after a fall). The government now pay for 'interim' care for 4 weeks which includes and 'assessment' after which we will need to fund Mum's care.

What worries me is that we need to find a Nursing Home that is familiar with PCA and so far I have contacted 3 of them, and not one of them is familiar with PCA and its symptoms.

I know you haven't posted for a while, but I am wondering if you are in a similar situation to ourselves. My Dad has been a wonderful carer for my Mum, but when he was getting to the stage of having to carry my Mum to the toilet we realised that it was all too much for him (he's 80 and has arthritis).

Hello Everyone

My mother is 79 years old and has been very fit and active always. She was diagnosed with Alzheimer's about four years ago, but since then we have done plenty of googling and discovered that she fits the description of PCA exactly. I spoke to her doctor the other day and mentioned this but he commented that there's little reason to think that knowing an exact diagnosis would be of help - is this true?

First of all Mum went to the optician's, as she was convinced she needed new glasses. She then realised that she couldn't read or write, tie shoe laces, follow a recipe, see the numbers on the cooker knob, put her purse in her handbag, open the door with a key, put a cup on a saucer, set the table, dress and undress, fasten her seat belt. In recent months I feel she has been getting worse. She slipped down the last couple of stairs and broke her wrist. She doesn't realise that she has a left arm at all and, if you ask her where it is, she has absolutely no idea and might point at the table or a cup. She tries to do everything one-handed. My father looks after her wonderfully, but gets very tired and sad. I feel Mum is depressed, as she knows she has problems (although she's not exactly sure what they are or how they affect her or anyone else) and says things like 'I don't want to be here any more. I can't believe I'm in this state.' It's awful when she is this sad and gets very weepy. WE have managed to get social services on side and they have been marvellous, organising a carer morning and evening to help with dressing and undressing. Although she tried aricept and galantamine, nothing agreed with her and so she takes no drugs at all now.

I live four hours' drive from Mum and Dad, but keep going to stay for the week to give them a break. I can see that at some point Dad will crack under the strain. A care home might be the answer, but he is putting that off until the last possible moment and Mum has a morbid fear of going into somewhere and being there for years in a state of limbo.

Sorry to ramble, but it's so sad and so difficult to know what to do to help.
 

grove

Registered User
Aug 24, 2010
7,723
North Yorkshire
Hello Kirsty , Welcome to T P ! tho so sorry to read about your Mum :( do hope you find T P as Supportive & helpful as i have ! & have even made Friends :)

Am sorry not able to give any Advice ( my Father has Moderate Dementia & i try & Support Mum & Dad as much as i can ...... live near them :) )

Just sending much Love & Support to you & your Mum & Dad for the Days & weeks to come ........ good that your Mum is having a " Home Help " to have a Cup of Tea " with . Wishing you & your Mum well with that & your Mum might surprise you & "accept this Helper " with out any fuss !

Take Care

Love & Hugs Love Grove x x
 

tre

Registered User
Sep 23, 2008
1,353
Herts
PCA Support Group in London

My husband has PCA and we have been lucky enough to attend this group for a couple of years. They are amazingly helpful and there is lots of information on their website at www.pcasupport.ucl.uk including the newsletters which have details of what we have discussed. If you have not already found this I suggest you look at the website. I think this certainly was the only specific PCA support group worldwide but there was talk of satellite groups in the future. You could drop them an email to see if they know of anything.
Tre
 

PostTenebrasLux

Registered User
Mar 16, 2010
768
London & Oxford
My husband has PCA and we have been lucky enough to attend this group for a couple of years. They are amazingly helpful and there is lots of information on their website at www.pcasupport.ucl.uk including the newsletters which have details of what we have discussed. If you have not already found this I suggest you look at the website. I think this certainly was the only specific PCA support group worldwide but there was talk of satellite groups in the future. You could drop them an email to see if they know of anything.
Tre
Thank you Tre for the reference. (The correct website address includes "ac") and should be http://www.pcasupport.ucl.ac.uk/meetings.html

Coming very soon!
Friday 18th November 2011 Conway Hall, Red Lion Square, London WC1R 4RL. The speaker will be Dr Angus Kennedy on 'How to be a Neurologist in one easy step', followed by a question and answer session.
Friday 3rd February 2012 The Speaker will be Mr Steve Lines, Head Teacher at Lindon Bennett School. Please note this meeting will be at a different venue to previous ones.


Do try to attend or get in touch with the PCA - the only one of its kind indeed!
 

tre

Registered User
Sep 23, 2008
1,353
Herts
Sorry to have missed a bit off the address- one eye on what I am doing and the other on my husband who is needing constant support at present. Thanks Martina for pointing people in the right direction.
Tre