PCA Diagnosis but no further help

[Lauren90]

After about 5 months of tests my mum has been told she has Posterior Cortical Atrophy (diagnosis came in a letter!) we have not been told anything further.. next steps, treatment, etc. GP is pretty rubbish and just tells us he doesn't know anything else when we go. Any advice for next steps or what to do?
Thanks

 

[pand8452]

Hi Lauren. There is lots of information and support material about PCA on the Internet as well as Facebook support sites. On Facebook search for Posterior Cortical Atrophy awareness (UK) and Australian PCA support. Both are closed groups but when you are accepted as a member you can search extensive material (under "Files"). Also try to Google "Posterior Cortical Atrophy Support Group Website" if Facebook doesn't appeal.

Let me know if you need more information or have any other questions.

 

[pand8452]

I should have added that the first step is to get a referral to an informed neurologist - this condition definitely requires specialist advice and support. If you raise this on the Facebook groups I mentioned, I'm sure that other members will be able to advise who would be appropriate to consult close to your area.

 

[KatherineW]

Hi Lauren

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

Talking Point will hopefully be a great place for you to get support from other people living with dementia, but I thought I'd also post a link to the Posterior Cortical Atrophy Support Group Website. The PCA Support Group provide information and advice about the condition, and they also run support meetings. Hopefully they will be able to help you and your mum, too.

Best wishes,

 

[Lauren90]

thanks

Hi both,

Mum got the full diagnosis yesterday from University college hospital London. Very hard to hear about life expectancy etc. They said she was the youngest person they've ever diagnosed with it there!
Thank you both for you help, I'm sure the PCA website will be a great help to us.

Thank you.