Wednesday 28 April 2010
Living with PCA
As I have been trying to live a normal life as someone with PCA problems - problems that cause problems with eyesight conditions - I'd be pleased to hear from anyone who has been recently diagnosed with this form of Alzheimer's Disease and would be willing to exchange ideas and articulate thoughts/fears/whatever with them. Apart from difficulty with simple living situations it would be helpful perhaps to exchange ideas fairly frequently to try and bring in a group of people rather than doing it as a solo exercise.
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11 comments:
My wife's estimated onset of PCA was 5 years ago at age 50. We are going to be visiting London in May 2011 and would love to meet with anyone who has PCA to discuss how best to deal with its symptoms. Terry Pratchett has helped bring more understanding of the disease in Britain than the US.
My friend, Ann(British), has a husband who has PCA and lives in France. She would like to write to other people who have been having similar experiences.
My husband was diagnosed with PCA a year ago after a long period of trying to find out what was wrong. I have found that there are few people in Australia who have even heard of PCA. I would like to communicate with others caring for someone with PCA, as I am finding it a challenge to know the best ways to deal with the unusual visual symptoms.
I was diagnosed with PCA last year, but looking back it was appaarant that I had symptoms for at least four years. Yet the symptoms are elusive and not conclustive.
it is a strnage ilness and one of the problems is knowing when the bad times start to kick in. It still surprises me that new, different symptoms appear.. I find it odd, for example, that I cannot drive a car, but I ccan usuallly beat my 20 year old sun at table tennis, although I must admit that I an now always losign.
I think that this is a very good blog site and I would be willing to talk to anyone about the disaeas.
Hi deb,
My mum has just been diagnoses also after approx 5 years of showing symptoms.... Have you had any luck in Australia re support groups?
I am in Sydney.
Any help whatsoever would be good
Thanks
Ed
My husband was diagnosed last year with PCA...we live in United States...I would love to talk to others who care for those who have this dreadful disease. It seems there's much more information in UK than US.
Not much happening here?
Anyway - a few links for you guys
http://www.pcasupport.ucl.ac.uk/meetings.html
http://forum.alzheimers.org.uk/showthread.php?22137-Mum-has-PCA-Bensons-Syndrome
http://www.orpha.net/data/patho/GB/uk-Benson.pdf
What does everyone do about phones, alarm clocks, medicine distribution? How do I make my mom's life less frustrating?
Australian PCA website at:-
http://www.pcaaustralia.org
I might not get any response to this, but let's try. My mom has been diagnosed with PCA. I would appreciate anybody with advice. It's not a widely spoken about subject, and to be honest...I feel a lost
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