Seems I have PCA

[Jeanie 73]

I.e. 'Posterior cortical atrophy' my sight is badly affected and any stress makes it much worse!
At the same time it also makes most of what's happened over the last few years suddenly seems to just click into place although it's only fairly recently that it's affected me more when going somewhere different, i.e. Supermarket. I can't read prices or even recognise the picture that shows you what it is! For a while I was ok at home,but not anymore. Just trying too type this causes my sight to merge into a blurry blob.
Know one seems to know much about it was only recognised in the eighties some think it's a sort of extra to the Alzheimer's,but truth be known they don't really have a clue.

Looking on the bright side I may continue to know exactly what is happening to me, just as I always have done and it's more likely that the end may be because of something like
Pneumonia than the Alzheimer's! That possibility cheers me somewhat as I feared the effect of not knowing my family and friends would devastate them and cause much sadness.
I will just soldier on as best I can.

 

[LadyA]

Jeanie, not sure what to say, but your courage at the very least deserves a hug. {{{.}}}

 

[Haverton]

Hi Jeanie. You show lot of courage. I share some of your symptoms but to a lesser degree. My vision is blurred at night especially. When I read i tend to miss the next line. I am always happy to see you on TP. I think that you have a lot to offer. Take care

 

[Jeanie 73]

A fruitful but some what deeply annoying day today, followed by a bit of retail therapy.
First stop my bank just to make sure everything was in place that needed too be. It was.
Ever since my original diagnosis everything said I must sort out 'Power of attorney' at a cost of almost a thousand pounds I fought against it,surely someone with only a moderate amount of money and no property did not need something so expensive? In the meantime I added my daughter to my bank account, and the fact was that that was all I needed too do!!! Neither do we need for my daughter to apply for probate when I'm gone!
My wishes are clear in my will and all she will need to do is show them my death certificate.
So much angst has been caused for us by those who with good intentions mainly plus most things we read said 'You must have power of attorney'
I have been so angry today about it, but I must stop that and not dwell on it anymore. Writing it down on here helps.
So for the time being we will go out when I'm ok to go and Joy can enjoy her away days and I will simply enjoy my garden for as long as possible❤️❤️❤️
I would add that my funeral was organised and paid for some time ago as well as my will was made I just needed to know that I left things as simple as possible for my family when I'm no longer here.
One more thing that may help someone else in a similar situation and that is that if whilst you still can mentally, you contact the pension or disability people you can arrange for who ever you wish too take over your finances when you can no longer manage it yourself ,they will come out and visit you at no cost and make those arrangements.
Hope this helps someone❤️❤️

 

[Jeanie 73]

Hi Jeanie. You show lot of courage. I share some of your symptoms but to a lesser degree. My vision is blurred at night especially. When I read i tend to miss the next line. I am always happy to see you on TP. I think that you have a lot to offer. Take care

Thanks means a lot❤️❤️❤️❤️

 

[Jeanie 73]

Jeanie, not sure what to say, but your courage at the very least deserves a hug. {{{.}}}

Thanks for the hug. Been needed today❤️❤️❤️

 

[Sammyjo1]

Hi Jeanie

My husband was diagnosed with Alzheimers 3 years ago and it's only just in the last year that it has been confirmed that he has PCA. Like you he struggles to read. He also finds it hard to get around and to remember where things are in the kitchen. But he is still very alert and able to have conversations and hasn't lost his sense of humour.

There is a really good research group at UCL, London which specialises in PCA and also there is a Rare Dementia Support Group which has newsletters and so on. If you are on Facebook, there are a couple of groups Posterior Cortical Atrophy Awareness and Posterior Cortical Atrophy Early Stages which you might want to join but they do talk about later stages of the illness which I am not sure how you would feel about seeing just at the moment

Good luck with everything. I really admire your positive attitude

 

[Grannie G]

You are inspirational Jeanie.

 

[Jeanie 73]

Hi Jeanie

My husband was diagnosed with Alzheimers 3 years ago and it's only just in the last year that it has been confirmed that he has PCA. Like you he struggles to read. He also finds it hard to get around and to remember where things are in the kitchen. But he is still very alert and able to have conversations and hasn't lost his sense of humour.

There is a really good research group at UCL, London which specialises in PCA and also there is a Rare Dementia Support Group which has newsletters and so on. If you are on Facebook, there are a couple of groups Posterior Cortical Atrophy Awareness and Posterior Cortical Atrophy Early Stages which you might want to join but they do talk about later stages of the illness which I am not sure how you would feel about seeing just at the moment

Good luck with everything. I really admire your positive attitude

Many thanks for useful information, I'm one who needs to know everything and then I can deal with it, it's the unknown that bothers me.❤️❤️

 

[Jeanie 73]

You are inspirational Jeanie.

Many thanks grannies G, but doesn't really feel like it.
I have had far from an easy life from a very young age an abusive mother who when I reached my thirties told me she had never wanted me! Not that I actually needed telling that,had worked it out for myself!
I did marry a good man and we worked hard together,moving into our own butchers and small holding business with a two week old baby.
Four years later he had a medical and I was told he must sell the business and move out,by then we also had a one year old daughter and I was told he had two years too live at most. He had a serious heart condition that could not be treated.
But he got another job, as a butcher and moved up here totally ignoring doctors advice! By doing that he actually kept himself alive as he caused a hernia! That had to to be operated on and that led to him being sent too Papworth in Cambridgeshire, that was in 1966, early days in heart surgery, but it was successful.
He lived another 18 years, happy years! But I was widowed aged forty two.
The next few years were (too long and lengthy to go into, but far from good.
Sometimes feels as if was toughening me up for the final test Alzheimer's and now this!!

I don't rant and rail what's the point? We each have our way of dealing with what life throws at us. I just quietly get on with life making the best of it as possible ❤️

 

[Rich PCA Carer]

I.e. 'Posterior cortical atrophy' my sight is badly affected and any stress makes it much worse!
At the same time it also makes most of what's happened over the last few years suddenly seems to just click into place although it's only fairly recently that it's affected me more when going somewhere different, i.e. Supermarket. I can't read prices or even recognise the picture that shows you what it is! For a while I was ok at home,but not anymore. Just trying too type this causes my sight to merge into a blurry blob.
Know one seems to know much about it was only recognised in the eighties some think it's a sort of extra to the Alzheimer's,but truth be known they don't really have a clue.

Looking on the bright side I may continue to know exactly what is happening to me, just as I always have done and it's more likely that the end may be because of something like
Pneumonia than the Alzheimer's! That possibility cheers me somewhat as I feared the effect of not knowing my family and friends would devastate them and cause much sadness.
I will just soldier on as best I can.

Hi Jeanie, you've summed up what my wife experiences and also her attitude to the condition. She was diagnosed 2 years ago and can still read any word you like and tell you what it means but can't read a line of text as she can't get her eyes to follow it. Money and finances are also a thing of the past, but she is fully able to contribute to financial decisions and plan for the future. Psychologically it is a very tough road, but you and my wife seem to have the right attitude to tough it out. I struggle far more, not with the burden of caring, since that is slight, but simply living alongside her as she copes and has the occasional meltdown.

It seems odd to say it, but smile and be happy. Get on with the things you love and enjoy life.

 

[Jeanie 73]

Hi Jeanie, you've summed up what my wife experiences and also her attitude to the condition. She was diagnosed 2 years ago and can still read any word you like and tell you what it means but can't read a line of text as she can't get her eyes to follow it. Money and finances are also a thing of the past, but she is fully able to contribute to financial decisions and plan for the future. Psychologically it is a very tough road, but you and my wife seem to have the right attitude to tough it out. I struggle far more, not with the burden of caring, since that is slight, but simply living alongside her as she copes and has the occasional meltdown.

It seems odd to say it, but smile and be happy. Get on with the things you love and enjoy life.

Thank you so much for sharing this post with me, there have been so many things that simply did not add up over the last few year, it's quite a relief now I know.
Please give your wife and yourself a hug from me ❤️❤️ And yes I will keep on smiling ❤️

 

[Jeanie 73]

Well I eventually got to see my optician and he did know of P.C.A. My eye are fine,but I have no peripheral sight. When the female stopped the test and went to tell him my daughter heard him say 'he was not surprised. He has changed my prescription a little so will see how I got on when new specs are ready, but obviously it won't make any difference re the neurological problem.
Maggi who came too see me from memory clinic had not heard of it,but said she will follow it up. I do know that I'm already on the best medication for it Ebixa.
In the mean time Daughter and I went to the garden centre where they had a display of bamboo, but what I originally did not see was an enormous panda sat in the middle of it It wasn't until we went into the restaurant that I glanced out of the window and saw it! So I suppose that there are interesting times ahead!❤️❤️❤️

 

[Grannie G]

You are being so positive Jeanie. I`m full of admiration.

 

[Jeanie 73]

You are being so positive Jeanie. I`m full of admiration.

It's knocked me back a bit, but as always I believe I have two choices either be miserable for what ever time I have or make the best of things! How I react affects not just me, but my family also. As with all the dementia no one can give you a timetable so it's make the best of whatever time we have❤️❤️❤️

 

[Creeping Snail]

Hello Jeanie
I am full of admiration for your positive attitude, but I need help from others and their carers who are much further down the line. My husband has PCA, finally diagnosed correctly this year by our ophthalmologist. He has now just started a course of Ebixa, but I am not optimistic. We are at the stage where he does not recognise our house and the rooms within it. We have family pictures on the wall, but have to go through them every day. He is at his worst in the morning, and recently won't eat breakfast because the cereal is laughing at him. He is terrified of everything because it is not familiar, and wants me to take him somewhere nice. What can I say?Is there anyone out there who has experience and can advise me, please?