Wondering about the later stages of PCA

padawan444

New member
Oct 23, 2018
8
Wallingford
Hi all,

I saw my Mums neurologist last week, and was given the news that she has Posterior Cortical Atrophy. She is 65, but I'm almost certain that she has been experiencing symptoms since around 2011/2012. It has been an incredibly exhaustive and emotionally charged journey to get to this point. I live 2.5 hours away and have a 3 year old and a 1 year old. My Dad died back in 2016.

What is perturbing me a great deal now - is how to tell what stage my Mum has reached. I suspect that her symptoms have progressed very rapidly.

A fortnight ago, Mum was found by her carer (at this point she was living in an independent living flat and having 2 care visits a day), having fallen over in her flat, and been unable to get back up. Nobody could ascertain when Mum fell and how long she'd been there. An ambulance was called and the paramedic was concerned that Mum was leaning very far to one side when she stood up and walked. She was brought to hospital, and friends were sure that she'd be discharged fairly quickly. However, over the days that followed Mum could not move easily between her bed and her chair. She had several falls trying to get between the two, at one point falling and banging her head quite hard. By the end of last week she was bed ridden, and unable to move, other than to lift her head slightly, or to grasp on to the sides of the bed. She is having to be shifted around with a hoist. No one has been able to say what has caused this sudden loss of mobility - whether she has had several TIAs for example. When I saw Mum she was very dizzy and frightened, and very little conversation could be had other than her repeating that she was very frightened and angry. She is having to be fed and changed. I am now told that she is awaiting a bed to become available in a nursing home, so that she can have further assessments carried out. This could take several weeks. I would then like to settle her in a permanent nursing home.

Now that we finally have a diagnosis for Mums symptoms, I feel like I would like to know how this disease progresses in the end stage, and whether Mum is going to remain in her current predicament for a long time.
 

canary

Registered User
Feb 25, 2014
11,342
South coast
Hello @padawan444
All dementias end up pretty much the same at the end. The differences between them are due to the areas of the brain which are affected first and exactly what is causing the damage (different abnormal proteins, vascular damage, some other damage). Im not sure that anyone has produced a documentation of the stages of PCA. but even if they had Im not sure it will tell you what you want to know.

Unfortunately there is no knowing how long this will go on. Even with Alzheimers, which is well documented there is no knowing how long the stages will last. I asked the memory clinic doctor the same question when mum was diagnosed with Alzheimers and he basically said - how long is a piece of string?
What I can say, though, is that your mum will not recover. Once something is lost, it will not come back, so it is very unlikely that she will regain mobility and continence. Im sorry - that is probably not something that you wanted to hear.
 

padawan444

New member
Oct 23, 2018
8
Wallingford
Thankyou though - that is helpful in itself. Friends have been waiting for her to gain a bit of mobility back. But at least I know that she isn't going to, and going into a nursing home is the only option for Mum now, and so I know that it will be time for me to sell her flat very soon. So much of the last week or so has involved speculation about when she'd be discharged back home!
 

polly1

Registered User
Dec 8, 2011
307
Hampshire
Hi all,

I saw my Mums neurologist last week, and was given the news that she has Posterior Cortical Atrophy. She is 65, but I'm almost certain that she has been experiencing symptoms since around 2011/2012. It has been an incredibly exhaustive and emotionally charged journey to get to this point. I live 2.5 hours away and have a 3 year old and a 1 year old. My Dad died back in 2016.

What is perturbing me a great deal now - is how to tell what stage my Mum has reached. I suspect that her symptoms have progressed very rapidly.

A fortnight ago, Mum was found by her carer (at this point she was living in an independent living flat and having 2 care visits a day), having fallen over in her flat, and been unable to get back up. Nobody could ascertain when Mum fell and how long she'd been there. An ambulance was called and the paramedic was concerned that Mum was leaning very far to one side when she stood up and walked. She was brought to hospital, and friends were sure that she'd be discharged fairly quickly. However, over the days that followed Mum could not move easily between her bed and her chair. She had several falls trying to get between the two, at one point falling and banging her head quite hard. By the end of last week she was bed ridden, and unable to move, other than to lift her head slightly, or to grasp on to the sides of the bed. She is having to be shifted around with a hoist. No one has been able to say what has caused this sudden loss of mobility - whether she has had several TIAs for example. When I saw Mum she was very dizzy and frightened, and very little conversation could be had other than her repeating that she was very frightened and angry. She is having to be fed and changed. I am now told that she is awaiting a bed to become available in a nursing home, so that she can have further assessments carried out. This could take several weeks. I would then like to settle her in a permanent nursing home.

Now that we finally have a diagnosis for Mums symptoms, I feel like I would like to know how this disease progresses in the end stage, and whether Mum is going to remain in her current predicament for a long time.


In association with:


We are holding our support group meeting for people with Posterior Cortical Atrophy (PCA) and their carers on:

Friday 14th February 2020

2.00pm - 4.00pm

At the offices of Younger People with Dementia Berkshire CIO

First Floor, Indigo House,

Fishponds Road,

Wokingham,

Berkshire

RG41 2GY

Tel: 0118 2072880

Guest Speakers:

Dr Samrah Ahmed - Research Associate/special interest in early-onset dementia, John Radcliffe Infirmary, Oxford

Dilek Ocal and Tom Veale – Research Assistant/PhD Students – UCL

Our speakers will be explaining about their research programmes currently running and your chance to volunteer to take part.

Access to the venue:


Those that do not need the lift and can use the stairs please park at the back of the building where the entry door to YPWD can be found on the left-hand side, just ring the bell and someone will meet you.


For those needing to use the lift please continue to park at the front of the building and you will find the reception area at the front right hand side of the building where someone will direct you to the lift area.


Tea, coffee and light refreshments will be served. We do hope you can join us.

Please RSVP the latest by Friday 7th February 2020 by contacting me here.

Hello
So sorry to read your post.
Please see the attached flyer that might be of interest to you.
I help to co-ordinate these support group meetings.
There is also a ‘closed’ PCA Facebook page that has a wealth of information on it.
Best wishes