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Posterior Atrophy (PCA) in Gloucestershire

Rich PCA Carer

Registered User
Aug 31, 2015
107
North Gloucestershire, UK
Having lurked on the forums for some time since my wife was diagnosed with PCA last July, I think it is time I introduced myself. I am very much a newbie to caring but have been trying to get the best knowledge I can. We are members of the PCA support group at UCL and make a point of getting to the meetings in London to be able to talk to the experts on this rather rare early onset form of dementia. I also did the UTAS MOOC on understanding dementia. This didn't mention PCA even once, but it was still relevant and very interesting. The Positive Caring Programme provided by Carers Gloucestershire and the sessions provided by the 2gether Trust have also been very useful.

In my wife's case the PCA is caused by Alzheimer's disease affecting the posterior of the brain resulting in damage to her vision. She cannot drive, understand maps, can only read slowly and for a limited period, has difficulty writing and her vision is disturbed by glare, reflections, transparent objects and movement. She also has difficulties with depth perception and judging relative speeds. This all makes getting about a little tricky.

Mercifully, she retains her sense of self, sense of humour, long term memory (apart from memories which are spatial in nature) and can look after herself most of the time. So, for now, the impacts on us are relatively mild. The journey is just starting.

I have been heartened by the compassion and breadth of knowledge on this forum and hope to contribute in the future as and when I have something useful to say.

I would be most interested to know of any others with PCA and their carers who live in and around Gloucestershire.
 

canary

Registered User
Feb 25, 2014
12,204
South coast
Hi Rich
Mum has classic Alzheimers rather than PCA and I dont live in Gloucestershire, but I want to say welcome to TP :)
 

polly1

Registered User
Dec 8, 2011
307
Hampshire
Hello Rich
Welcome to TP. My husband has PCA. He is 61 and was diagnosed in December 2011. Sadly, the illness progresses. It is horrid. We used to go to the support group meetings at UCL. It is far too difficult for us to get there now. We live in Aldershot and whenever possible attend the support meetings that are held in Wokingham, Berkshire.
There is a 'closed' Facebook page for PCA sufferers and their carers. I find that invaluable.
Wishing you all the best. Make the most of every day and try and do that bucket list asap.
Polly
 

Rich PCA Carer

Registered User
Aug 31, 2015
107
North Gloucestershire, UK
Hi polly1,

I am in the Facebook group and do find that very useful for PCA specific information. We did manage to attend a regional meeting in Oxfordshire, but we're keen to meet people who are close to us. I am working on setting up a regional group based on Gloucestershire.

Thanks and best wishes for the future.


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