Eating out with PCA

I found an old post dated 4 July 2010 on my main blog and thought it would be helpful to re-post it here:

Eating out with Mum can be a challenge as her form of dementia (Posterior Cortical Atrophy) means we have to bear a number of things in mind:

-  choose a table away from 'through traffic' as movement within her eye-line can disorientate her;

-  sit in a quiet-ish space;

-  tables narrow enough to lean over and help or someone sits at 90 degrees so it's easier to assist if necessary;

-  choose simple dishes from the menu that are straightforward for her to manage mainly on her own.

Tonight we ate at Ruby's in Bushey Heath.  We've eaten there a number of times before as the menu is reasonably priced with a good variety of tasty, well-proportioned dishes (aka the size that even my Dad can't finish and is therefore impressed!)

Exterior

The service is always good although tonight, they really outdid themselves:

-  they released a table that was technically reserved as it was away from the main walkway; 

-  they laid out the menus before we sat down but not in front of Mum (I had mentioned she had dementia but was really impressed with this as instead of being on autopilot when setting the table, they had clearly thought this through); 

-  extra plates were brought within seconds of being asked so we could organise the food so Mum had less in front of her hence making it easier for her to manage on her own; 

-  when checking how we were doing, staff made sure they directed simple conversation to Mum as well in order to include her wherever possible.

Of course the big thing has nothing to do with the restaurant itself but her fellow diners.  Dad gets tired of having the same conversations over and over again, so to give him a break it's important that one person focuses just on Mum and whatever she wants to talk about (usually topics/people that go waaaay back!!).  

It therefore is becoming increasingly challenging for anyone other than family or long-standing friends to share time with her as whoever is involved in the conversation needs to remember the key subjects and names that she's recalling otherwise the whole thing is very frustrating for her.  I'm happy to take on this role in these situations so all-in-all, the whole evening went off extremely well.

Needless to say, Dad will be going back there again - hopefully with us!  

PCA treatments - presentation

This presentation was given to the PCA Support Group at our meeting on 3 February 2012.  

I thought it clearly showed the challenges of getting a drug to market and also highlighted for me why pharmaceutical companies don't want to invest in therapies for dementia: without a clear line of sight for the impact on the bottom line, there just is no incentive for them to do so.

Anyway, feel free to have a flick through and let me know what you think:

 

The back story

Pca_logo
In one of our PCA newsletters, there's an article written by one of the original members of our group, Sue Doggett who cares for her husband, Graham.  Thank you, Sue for sharing this with us.  

For anyone who's interested in attending our next meeting, it's being held at Wilkins Old Refectory, University College London, Gower Street, London, WC1E 6BT.  Please send an email to Jill Walton, our wonderful research nurse to let her know you're coming: jill@pdsg.org

 

"Then & Now

Seven couples attended the first P.C.A. Meeting, organised by Riitta & Seb at the National Hospital, on November 2nd 2007.

Until then we had met no one else with P.C.A. & had felt somewhat isolated and ‘odd’ when we went to general Alzheimer’s groups.

We had taken over five years to get the P.C.A. Diagnosis since Graham was told, in September 2002 that he had an ‘eye problem’ which could be resolved if he did muscle strengthening & tightening exercises on his eyes. In 2005 he spent several nights in a London hospital undergoing a battery of tests and was still not told for another two months that they had concluded that he must have Alzheimer’s but that they had not seen anyone with his exact symptoms before & that no medication was prescribed. After another eleven months a family member suggested we ask for a second opinion & we finally came to Queen Square.

In Jan 2007 we saw Dr Mallucci who immediately recognised Graham’s symptoms as typical of P.C.A. & he started on 5 mg of Aricept.

Compared with now it seems we were in ‘The Dark Ages’. Just knowing the problem & having effective medication made such a difference to Graham’s life & outlook & helped us all to understand & cope with the symptoms.

The P.C.A. Meetings, thanks to Myrtle and her family, have been a source of information, friendship & help in what is a difficult & rather bizarre experience."