Prosopagnosia Research at Bournemouth University

Prosopagnosia Discussion Board

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Posted By Dr Sarah Bate on 28th Jul 2011 at 19:28

Is a support group for people with prosopagnosia and/or their family members needed? Monica Zenonos, a Londoner with developmental prosopagnosia, is setting up a prosopagnosia support group that will meet on a monthly basis in London. Monica was diagnosed with developmental prosopagnosia in 2007, has worked in NHS for several years supporting patients, families and carers and has recently qualified as a counsellor, obtaining a PGDip in Psychosynthesis Counselling from the University of East London. Monica is keen to hear your views about the proposed support group. Is such a support group needed and why? If you attended the support group what would you like to get out of it? Do you have any other ideas that might help the project? We would be very grateful if you could use this discussion forum to provide us with your thoughts, even if you don’t live close enough to London to attend the group.

Posted By Renae on 15th Aug 2015 at 20:11

I would find education on strategies for lessening the impact on every day life helpful. Like when and how to tell people, any new compensation strategies (other than the hugely memory consuming method of characteristics+standout physical features+Voice+group/context=recognition that I think most of us use), and whether there is anything that can be done to improve it. Some explanation for family/friends would be helpful as well as suggestions about how they can help in day to day life. I think these could be done as part of a follow up to the diagnostic. A social network group would be interesting to be a part of to discuss similar experiences and share our embarrassing moments with people who get it, but I don't feel I need a support group as such. Perhaps if it was acquired, but I'm a developmental, this is all I know.

Posted By Unknown on 25th Mar 2015 at 22:01

Sorry, I think my last post about dealing with PTSD belongs somewhere else. Not sure where to post it though.

Posted By Unknown on 25th Mar 2015 at 21:56

Until very recently, I was completely unable to recognize faces - even my own mother's. As did many of you, I found work-arounds like always visiting people at the homes or offices where I'd know who was there, or by recognizing a person's walk, or by waiting until they said something and recognizing their voices. I'm excellent at recognizing voices and can usually recognize someone by hearing them only once, even if it's on the phone. But now, after years of therapy to deal with PTSD resulting from being an incest survivor, I can recognize faces. Part of my therapy was learning how to stop being super-vigilant about my surroundings. I used to need to know where everyone was located in my environment at all times. Subconsciously (and sometimes consciously) I would keep track of exactly where everyone was at all times. I spent a long time learning how to stop doing this. And now I find that I can recognize faces just like most other people. My completely unscientific theory is that the parts of my brain that now recognize faces used to be too busy keeping track of people in my surrounding, so that no brain energy was left over for facial recognition. Now I can recognize people I'd only seen before while I was unable to recognize anyone. I can tell you that's it's a huge relief to be able to recognize people. While my friends always knew that my not recognizing them was a brain problem I had and didn't take it personally (they all knew they'd have to talk to me before I'd recognize them, and would clue me into what was going on in movies when various characters entered the scene) they were exceptions in my world. Many people were hurt that I didn't recognize them, even though I'd been talking to them half an hour before. It's a real relief to have this new ability.

Posted By Anonymous on 8th Feb 2013 at 18:34

If the support group could have someone teach me additional coping strategies than the current pathetic, nearly useless, set I already have, I'd fly from Boston to the UK monthly! OK, that's hyperbole but gosh, I'd sure love to have a support group here (in Rhode Island, USA) that could teach me better coping strategies. Someone's reply that "I hope they all wear name badges" made me laugh. A family support group is a good idea, too. My husband and three of my children do not have this issue. Sometimes they find it rather annoying. Often it's funny in a pathetic sort of way that I have trouble recognizing them. My husband realized I had this problem since our very second date. We've been married 23 years so I guess his feelings haven't been TOO hurt when I don't recognize him. But golly, it's mortifying when you find yourself thinking some absurd thought about someone only to learn a few minutes later that it's your own spouse you were thinking about!!! OK, so it's only mortifying internally if one had the wisdom to NOT say the thought aloud. But it's only a matter of time... I'd also love to learn from a support group how I can make my life easier by NOT making the mistakes others have. For instance, I recently had a volunteer stint as a fee-taker for entrance to an event. Once the fee was paid, the person's hand was marked for exit/re-entry. Do you think I can remember a face from one minute to ten minutes later? People were offended that I asked to see hand stamps when they'd just come through my line not 10 minutes prior. So, if I could be in a support group I'd suggest it's probably better to volunteer to dish out the lunch food than to be a fee taker at the admissions gate.

Posted By Ruth on 24th Jan 2013 at 19:33

Is there any online support? I am having a hard time with my two year old son who has just had his first hair cut. Any emotional help would be greatly appreciated. I'm in the UK south east but have two small children so hard to travel...

Posted By Jacques on 20th Jan 2013 at 22:23

Hi, Monica. Is your support group still meeting?

Posted By john on 1st Oct 2012 at 6:01

Hello Anonymous--I live on the West Coast (U.S>) as well and like to find other people. I am not sure how to post to your directly so I will check back in a few days

Posted By monica on 4th Aug 2012 at 10:31

I live and work in London . Have you thought of setting something up? Id be glad to help with advice and support :)

Posted By Anonymous on 20th Jul 2012 at 9:17

Any meetings in the United States on the west coast?

Posted By monica on 1st May 2012 at 21:32

Next Meeting of London Faceblind Group is on May 14th from 6:00-8:00 Please contact me if you would like to attend on [email protected]

Posted By monica on 11th Mar 2012 at 9:46

Hi Janet ,the last meeting which was in February went very well and we had one of the researchers there to answer a few questions too. Normally it is just us face-blind folk there and there is usually a lively discussion about our various experiences and it is one of the few occasions when we can relax about the fact that we don't remember who everyone is ! Next meeting is on Monday April 2nd - let me know if you want to come and Ill send details .You can contact me on [email protected]

Posted By monica on 11th Mar 2012 at 9:46

Hi Janet ,the last meeting which was in February went very well and we had one of the researchers there to answer a few questions too. Normally it is just us face-blind folk there and there is usually a lively discussion about our various experiences and it is one of the few occasions when we can relax about the fact that we don't remember who everyone is ! Next meeting is on Monday April 2nd - let me know if you want to come and Ill send details .You can contact me on [email protected]

Posted By Janet on 2nd Feb 2012 at 17:33

Is there going to be another meeting in London? How did the last meeting go?

Posted By Kieran on 20th Dec 2011 at 10:30

I hope you all wore name badges! (that's how I get by at work)

Posted By monica on 10th Nov 2011 at 15:10

The first meeting of the London Face blind group is on Monday 14th November from 6:00-8:00 . Please contact me on [email protected] if you would like to attend.

Posted By monica on 10th Nov 2011 at 15:03

Ha ha love the idea Peter... a sort of 'my wife/husband doesn't recognise me group' . Sounds like a good idea for a sitcom!

Posted By peter on 17th Oct 2011 at 14:26

i don't really understand what a support group would do. Would make more sense to have a group for people who know people who have the condition and feel put out when they are ignored because they aren't recognised

Posted By Anonymous on 21st Aug 2011 at 21:19

I'm not diagnosed with PA but am dx'd wtih ASD. I would love to hear of something happening in the North of England! Regards online support groups, try googling for "the faceblind folk". Very friendly and supportive.

Posted By Peter on 17th Aug 2011 at 22:46

No, I don't know of that group. I will look for it. Thanks.

Posted By monica on 15th Aug 2011 at 16:47

Peter ,what a pity you're not in UK! I also found that once I had been diagnosed it made a tremendous difference to how I related to people and also found myself re-evaluating many things in my life.That's really what prompted my idea of forming a support group in London. Are you aware of the prosopagnosia yahoo group ? This group provides on line support wherever you are and may provide additional support you are looking for.

Posted By Peter on 8th Aug 2011 at 22:45

I would welcome an online support group. I live in the US, so am not available in the flesh. My recognition of this disorder in myself was very recent, but it has made quite a difference to my attitude toward social relations. I am not especially extroverted, but generally outgoing and quite willing to converse with anyone, but the fear of non-recognition holds me back.

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