Saturday, December 29, 2012

A Puzzling Diagnosis

Imagine watching your child kicking a soccer ball with friends or playing pick-up basketball but not knowing which child is yours. Imagine walking into a party in your neighborhood and not seeing a familiar face. Imagine attending a family wedding but not recognizing a soul. Since 1993, this has been Chuck's new normal. In his world, every face belongs to a stranger, even if the person he passes silently on the sidewalk or church pew is a co-worker or close friend.

Although Chuck looked exactly the same after epilepsy surgery -- once his hair grew back, at least -- no one looked the same to him. He was surrounded by the same familiar family members, co-workers, friends and neighbors but could "recognize" the people in his life only by their voices, gait, scent, mannerisms or distinctive hairstyle.

That's how Chuck discovered prosopagnosia in the first place. When he was discharged from the Medical College of Georgia 10 days after surgery, his visual perception seemed altered but the changes were subtle. Colors were the same, but the hues were different. If our dark blue Chevy Lumina was parked next to a similar model of the same color, Chuck sometimes went to the wrong car. He had trouble finding a certain can of soup in the pantry or locating a particular tool in the garage. For the first month or so following surgery, we thought these idiosyncrasies were related to the trauma to his brain and the gradual healing process. After all, Chuck had temporarily lost the ability to speak when his brain swelled in the days following surgery, and he was still undergoing speech therapy to help overcome difficulties with word finding and retrieval.

But when Chuck returned to work six weeks after surgery, co-workers also looked different. Since he couldn't explain the changes and seemed to reengage with colleagues during that first day back on the job, he chalked up the experience to sensory overload. But day two at the office was a repeat of the first. His co-workers were strangers once again.

Now, we knew something was wrong, though we didn't have a name or explanation for the problem. Imagine passing coworkers in the hall, sitting across from them in meetings or standing in line with them in the cafeteria and not recognizing a single face. And the problem extended beyond the workplace. Chuck couldn't pick out our two children among a group of classmates or teammates. If he lost sight of me in a crowd -- at church or in a grocery store, for instance -- he had to focus on remembering what I was wearing while searching for me.

When Chuck returned to MCG for a 10-week post-op assessment and testing, he mentioned the strange difficulty in distinguishing faces. Without a word, his neurosurgeon began pulling films from Chuck's chart while keying information into his computer. He examined the MRI film and notes from Chuck's pre-op testing. A few minutes later, he told us he strongly suspected that Chuck had acquired prosopagnosia. We now had a diagnosis, but we had no idea what the term meant or where it would lead us.


  1. I've been covering healthcare/medical news for 2 decades and knew very little about prosopagnosia until you shared your story. So many people appreciate the myriad advancements in neurological treatments, but there are obviously dangers and side effects. Thank you for informing and sharing your family's story. We have so much to learn about the human brain. I hope your blog brings more attention to this serious condition. I admire Chuck's ability to adapt and strengthen his other senses! It's a wake-up call for all of us and reminds us, once again, that blows to the head through sports/fun activities can have lasting consequences.

    1. Thanks for your comment, Lynn, and for reading the blog. Chuck's story is a reminder that a person's life can change in an instant, and that cutting-edge drugs and technology can be a mixed blessing for many patients.