Pca
- Thread starter henhut
- Start date
Hello Henhut and welcome to Talking Point.
Personally I have no experience of these types of dementia but I just wanted you to know that there are people here reading and posting and replying. Many are themselves carers and so often read and post at odd times. I'm sure there will be others along soon with personal experience.
In the meantime do keep reading around the forum and post away if you have any questions or worries x
Personally I have no experience of these types of dementia but I just wanted you to know that there are people here reading and posting and replying. Many are themselves carers and so often read and post at odd times. I'm sure there will be others along soon with personal experience.
In the meantime do keep reading around the forum and post away if you have any questions or worries x
Hello henhut and welcome to Talking Point.
There are a few people on here who care for someone with PCA and Im sure they will be along.
My OH has FTD, which also one of the rarer types. I know that PCA starts with visual/spacial awareness problems. My OH started with behavioural and emotional problems and difficulties with decision making, but I have been surprised at how much overlap there is between the different dementias.
There are a few people on here who care for someone with PCA and Im sure they will be along.
My OH has FTD, which also one of the rarer types. I know that PCA starts with visual/spacial awareness problems. My OH started with behavioural and emotional problems and difficulties with decision making, but I have been surprised at how much overlap there is between the different dementias.
Agreed, don't get hung up about the exact diagnosis, it doesn't really matter. Everything to do with help, benefits, best way forward and dealing with issues are specific to your circumstances not the exact "name of the beast".
Some people never get an exact, or correct diagnosis as it's not always possible until after death, it's all just a name not how your lives will progress.
The more specific you get the less people reply, the issues are common to us all, the diagnosis often isn't but we're all here to help each other as much as we can.
K
Some people never get an exact, or correct diagnosis as it's not always possible until after death, it's all just a name not how your lives will progress.
The more specific you get the less people reply, the issues are common to us all, the diagnosis often isn't but we're all here to help each other as much as we can.
K
hello @henhut
and welcome to TP
I wonder whether you have come across this website, it may be helpful
http://www.raredementiasupport.org/pca/
do post with anything that's on your mind - there are others on TP who have experience of PCA but it may take time for them to notice your thread - and as the others have said, we're all here to support each other in any way we can
best wishes
and welcome to TP
I wonder whether you have come across this website, it may be helpful
http://www.raredementiasupport.org/pca/
do post with anything that's on your mind - there are others on TP who have experience of PCA but it may take time for them to notice your thread - and as the others have said, we're all here to support each other in any way we can
best wishes
Hi - there is a very good Facebook page where everyone has experience of PCA - you will need to ask to join. Hope it helps
https://www.facebook.com/groups/147542335356010/
https://www.facebook.com/groups/147542335356010/
Hello Henhut my husband also had PCA. Join the Facebook group Posterior Cortical Atrophy Awareness group, I found them a great help. It was good to be in touch with other carers having the same problems as I was, in trying to take care of Cameron.
He was the first to get diagnosed in our area last June and since then other people have also been diagnosed with PCA. My husband passed away in March this year aged 66 and now I try to raise awareness of PCA and Young Onset Dementia as much as I can.
Carol
He was the first to get diagnosed in our area last June and since then other people have also been diagnosed with PCA. My husband passed away in March this year aged 66 and now I try to raise awareness of PCA and Young Onset Dementia as much as I can.
Carol
Hello Henhut
Earlier posts give further links to information on PCA. My husband was diagnosed in 2012 with PCA. He sadly passed away in May of this year aged 62. Through the face book group you will find out about local support meetings held periodically throughout the year. The main venue is via the UCL in London but we attended meetings in Wokingham Berkshire and I know meetings are held in the North West. I urge you to try and attend any meetings that you can. Your journey is just beginning and I wish you strength and courage to help you through.
Earlier posts give further links to information on PCA. My husband was diagnosed in 2012 with PCA. He sadly passed away in May of this year aged 62. Through the face book group you will find out about local support meetings held periodically throughout the year. The main venue is via the UCL in London but we attended meetings in Wokingham Berkshire and I know meetings are held in the North West. I urge you to try and attend any meetings that you can. Your journey is just beginning and I wish you strength and courage to help you through.
