Tuesday, June 19, 2012

People I Can't Tell Apart part 2

Can you tell them apart now? I couldn't except for one thing - the flag. Details other than the face, some of our best coping mechanisms.

People I Confuse For One Another

There are many pairs (or sometimes more than two) of people who I confuse with each other. Much of the time, its a similar hairstyle, hairline, or facial hair arrangement. Here is the first installment of People I Can't Tell Apart.  When I see one of them speaking on television with the sound turned down, I have no idea which one it is, and often mistake one for the other.

If Oprah is there, however, I know.

                                               Steadman Graham - partner of Oprah Winfrey

Eric Holder - U.S. Attorney General

Monday, June 18, 2012

We need a simple test for prosopagnosia -- Fine 342 -- bmj.com

This is one of my favorite First person accounts of life with Prosopagnosia. I relish its straightforwardness. It was published in the British Journal of Medicine by a doctor willing to tell his story.

We need a simple test for prosopagnosia -- Fine 342 -- bmj.com: "* Personal View

We need a simple test for prosopagnosia

1. David R Fine, consultant gastroenterologist, Southampton University Hospitals NHS Trust

1. davidrfine@gmail.com

He is a distinguished colleague and I am proud we are on first name terms: had I met him at the conference rather than the airport I would not have walked past. I was embarrassed, so my wife explained my problem, and his reply was unusual: “You must write a review for the BMJ so that others can understand your problem and benefit from your experience. Accounts of disability and how people cope are uplifting and help even those not afflicted.”

I have severe inherited (developmental) prosopagnosia, or face blindness. The term prosopagnosia was coined in 1947, but it has been widely recognised outside the context of brain injury only in the past decade. Its purest form is limited to facial recognition, but I also have problems with inanimate and animate objects and in interpreting facial signs of emotion and sex. I often fail to recognise my children or even my wife.

Prosopagnosia has shaped my life. At every stage I have failed to acknowledge friends and, more distressingly, those in authority. At school I would get lines for not raising my cap to a teacher or be shouted at (and worse) for ignoring a classmate. As a young man I ignored girls whom I had met the night before—not a good mating strategy. As a houseman I knew the patients by their beds; if the nurses moved them I would present the wrong case on the round. I find networking all but impossible, and social situations, from parties to conferences, may cause acute anxiety. Ward parties are the worst because I know other staff members by their uniforms and badges; in party clothes, with different hairstyles, they are strangers to me.

Even worse than ignoring someone you know is recognising someone you don’t. Depending on the circumstances this can be interpreted as rude, deranged, or predatory. I have long learnt to smile politely at people who smile at me but to let them make the first moves in conversation.

How do I function personally and professionally? A look at my life reveals strategies. I have a limited number of friends, many of whom are physically distinctive: I suspect that is because I was able to recognise them at an early stage, allowing acquaintance to develop into friendship. I work in a hospital, so fellow workers are labelled and patients either come to me by appointment with notes, or are in a specific and allotted place. I memorise hair, jewellery, and favourite clothes. I recognise gaits, tics, and voices. The fashion for tattoos and piercings can help, but they are often hidden in daily encounters. Above all I rely on context: a person of a certain type in our corridor is my colleague—but in the supermarket is probably a stranger. Professionally I have limited myself to a small subspecialty, with a couple of hundred colleagues worldwide.

Being diagnosed helped. A friend used the term prosopagnosia in 1996, but only in 2005, when I found Brad Duchaine, then at the institute of cognitive neuroscience at University College London, did I realise how disabled I am. The news that I am “in the bottom 15%” sounded all right, until I realised that Duchaine was referring to the affected population rather than the general population (I’m eight standard deviations away from the mean). I then became a bore, telling everybody about it. Now I try to tell people on first acquaintance and only reinforce it if they say, “I’ve got that too”—most sufferers forget names but recognise friends and family without difficulty. Many people now reintroduce themselves when we meet. One exposes her tattoo, normally only visible in a low cut dress, which raises eyebrows.

Early on I would tell people how I recognised them, until my wife, who has an astonishing memory for faces, cautioned that inevitably I identified their worst features. Now I tell people who are difficult to remember that this is a compliment, because good looks are symmetrical (would that I had known that line as a single man). I have stopped bluffing and waiting for clues to emerge and consequently no longer finish protracted conversations ignorant of my counterpart’s identity.

I have met a few fellow sufferers, including a professor of psychology and an emergency department consultant; both are well adapted but possibly there are others less well adapted whose lives have been scarred more deeply. I have done well enough in life, but I believe that I would have achieved more professionally had I been better able to network. My hope is for a simple test to identify prosopagnosia in childhood (as for colour blindness), so that the next generation of sufferers grows up in a society that understands and recognises our disability. Meanwhile, if you think you may be affected you can check your facial recognition ability at www.faceblind.org.

Saturday, June 16, 2012

Prosopagnosia On 60 Minutes

60 minutes 18 March 2012 [video clip, Two-part segment on prosopagnosia - Part 1]
60 minutes 18 March 2012 [video clip, Two-part segment on prosopagnosia - Part 2]

Above are the links to a recent story about Prosopagnosia that aired in the USA on CBS news program 60 Minutes.

From my perspective, this is what a very informative and realistic representation of Prosopagnosia, and this seemed to be the consensus of the online support group I take part in. One of the subjects of the story belongs to this same support group, and I am so appreciative that she was willing to devote her time and candor to this project.

Please follow the links above to watch both parts. It's worth your time if you are interested in learning more about Prosopagnosia. I can honestly say I would not have changed anything in this story. Well done Leslie Stahl and the 60 Minutes crew.

- Posted from somewhere near my dog

Friday, June 15, 2012

Somewhere Closer To Normal

I just returned home from what would be an uneventful trip for most, on the subway to Soho (in Manhattan) and back. For me it was a glimpse into the life of a person without Prosoganosia (PA) and Topographical Disorientation (TD).
I have a service dog named Reykjavik, who for the last few years has been helping me cope with these two neurological disorders. Until recently, I had not been utilizing the full extent of his capabilities, because I was uncomfortable letting others know I had these disabilities. I did not tell anyone, and I never would have allowed Reykjavik to be thought of as a service dog, let alone wear any indication of such.
Now that I have decided to "come out" about all this, and embrace the use of a service dog, my world is changing dramatically. Today, Reykjavik and I took our second trip on the subway, from our home in Dumbo, into Manhattan. Riding the subway is a new skill for him, which he is learning rapidly. We are doing this once a week, for appointments and such.

Today we went with our friend N, to visit her physical therapist in Soho. This is a place where I have gone (always alone) for 12-20 visits over a period of a couple months, for the last 2-3 years for my own physical therapy. It's a place I got lost in continually - a maze of twists and turns on each floor, common in these old buildings on Broadway. We dropped N off, and as soon we were out the door of the PT's office, Reykjavik without pause led us directly back to the correct elevator bank (N told me today that there was more than one. I did not realize this before today because no pathway ever looks familiar to me. I just assumed I had always been coming in the same way, but had not.) There was not one wrong turn or backtrack made, as per my usual route.
We took the elevator down to the street(see picture of big dog in small elevator), exited the building and after some consideration on my part, turned right to enter a building 2-3 doors down where our good friend TBG had recently started working. I had promised her a visit. She had told me she worked on the 12th floor, so without looking for an office number we headed up in the elevator. We exited on the 12th floor, and I decided instead of texting her for suite number, I would just ask Reykjavik to find her. She is his godmother, so he knows her scent very well. This building was even more maze - like than the last, because the floor was bigger. Reykjavik started off one way, lost the scent, then turned around and headed back and right to her office. Once inside the big open room, which normally would have been a nightmare for me, with it's many desks and similar looking people, I just waited for him to find her, her to find him

(see picture of Reykjavik posing with a Flavorpill employee). So much less stress than normal. Once again when we left, he returned right to the elevator to head down.
We walked to a shop not far away, with me using my phone's gps and google maps for directions (to a store I had been to numerous times before). When we left there, I asked him to "take me back", and he took me right to the same subway station we had exited upon our arrival, though via a slightly different route, instead of precisely retracing our steps.
We waited for N to finish her appointment, then went down in the station to catch the subway back to DUMBO.

And just like that, we were home. We had gone to visit two different offices, with no premapping, and almost no wrong turns, no wandering in the wrong hallway, no asking people for directions, most of all, no stress about getting lost or not recognizing someone! It was so freeing not to have to concentrate on every step and turn, to have a measure of ease and assurity while moving about with the dog to correct, lead, or return me. To be fair, in the beginning of the trip, we had N to lead us to the physical therapy office. What Reykjavik does best is "take me back" or "take me home". And that is all he did today. And these were all small difficulties that he aided me on. Yet to me, it's a glimpse into the life of a NT, or neurotypical person.
- Posted from somewhere near my dog


Thursday, June 14, 2012

When I Least Expect It

I took my dog out the other day for an afternoon walk. We went out the door and down the street, then turned left and headed toward our favorite park. As we came to the first intersection, I stopped to look for cars, and also took note of people approaching me from each direction, and whether they were attached to dogs or not.

Just as I had finished checking everything out and headed across the street, a person a few feet away who I had noticed walking toward me, yelled my name and waved. It was our good friend N, on her way to the subway. I had looked right at her, and visually passed her by. Not unusual for me to not recognize someone, except, she was just a few yards from the door to her building, erasing one of my excuses, seeing some one out of context. Not only was it not out of context, but it was approximately where I meet her almost very morning, (this was afternoon) including this one, to walk our Great Danes together.

Now of all the people I expect to "recognize" N is one of those at the top of the list. She has a cool, distinctive style, and springy brunette coils of curls. This makes it 10 times more embarrassing for me not to recognize her. It creates the most awkward moment where I want to either profusely apologize or blend into the concrete of the sidewalk. Thankfully, N is very gracious and knows my problems probably better than most, so she just passes right over it. This is the blessing that comes from being open with people about Prosopagnosia.

In my defense, she did not have her Great Dane with her . . .

- Posted from somewhere near my dog