The back story

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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."