Monday, January 25, 2016

Let's Talk About Place Blindness and CP

Place Blindness:  the inability to orient oneself in one's surroundings, as the result of focal brain damage.

Place blindness, (also known as topographical agnosia) is something I have lived with my entire life without knowing it.  Until very recently I'd believed it when people around me told me my disorientation in public places was due to insufficient attention or the fact that I don't drive.  I happened upon one sentence on a social media site that changed everything for me.  It was something like:

Does anyone else with CP constantly get lost?

There was a small internet chorus of "yes!" and "I thought I was the only one!" Then came the response we were all waiting for.  There was a name for this.  Ever since then, it has felt like something has clicked into place for me.

In my brief research for this post, I've seen place blindness associated with autism and brain injuries.  However, there are no results when I search for both place blindness and Cerebral Palsy.  As CP is a result of brain damage, it would follow that at least some people with CP experience place blindness.  (Of my handful of friends with CP, every single one seems to have symptoms of topographical agnosia:  two get lost in Target stores, one said honestly that if expected to, she could not find her way home from three blocks away on a straight sidewalk.)

In layman's terms, place blindness means that I can navigate place to place only if there are significant landmarks guiding me.  I can go to the store beside my apartment building because my building is always in my line of sight as a landmark.  I can navigate inside the particular store because it is fairly small and they keep things in the same place.  I can even venture down the block, if I can see landmarks the entire time.  Landmark A must be visible from my apartment.  Landmark B from Landmark A and so on.  The same is true in reverse.  If the landmarks I rely on were to ever change, I would be lost.  Though I have lived in the same place for 10 years and my parents are 5 minutes or so away, I could not tell you how to get from here to there.  I know both street addresses, and the name of an important highway linking us, but I could not give you directions from place to place.  Likewise if you needed to rely on me to tell you how to get from my parents' house to mine, I would be even more confused, as all previous directions would be flipped and in reverse order.

I've gotten lost for an entire class period (that's the best part of 85 minutes) in my own high school because I arrived at the usual classroom slightly late and found a note that indicated the class had moved to a different room in a hallway I had no idea how to find.  While vacationing out of the country with my family at a resort, I once thought I was following my sister, and belatedly realized I had lost her and was following a stranger.  By the end of a week, I was finally barely beginning to be able to orient myself there.  I have trouble following if people point out something in a "Look over there," fashion.  "Over there," is too vague and I find myself looking everywhere and by the time I find where they mean, whatever detail that was pointed out to me has usually passed.  Your best bet is to point from behind me so I can follow the line of your arm down to your finger to see exactly where you are indicating.  This even extends to specific details on a TV show or video.

Here are a few key locations where my place blindness is the worst:

Parking Lots:  From the time I was very young, parking lots have been super disorienting.  If the door to the building I'm to enter is not in direct line of sight, I've been known to go in the complete opposite direction I'm supposed to.  When I was young, I did this to cope.  I felt if I picked a direction at random (left or right), I had a 50% chance of being correct, and I hated to annoy people by constantly asking, "Where?" This happens especially often if I need to go around the car to get to the door.  Walking back outside into a parking lot is equally baffling, because I can't easily identify someone's car unless they are driving it.

Department Stores:  Shopping in a bigger store is very difficult, because the sheer size is overwhelming.  I think it may have to do with being able to see the entire space from a single vantage point.  When I shop, even in someplace familiar like Target, things only look familiar when I am beside them.  Certain areas, like the food court, the checkout lanes or the multimedia section are fairly easy to find in a particular store because they also function as landmarks.  But in sections like clothing or grocery, I am lost again, unable to fit my surroundings into a larger context.  It is, to me, as amorphous as the lake against the grey sky in the picture below.

[Photo is a lake against grey sky, with blue mist rising off the water.  Photo credit to my sis.  March, 2013]


Restrooms:  Whether out to eat in a restaurant, at a friend's house I have never been before, or getting my hair done at the same place I always do, for some reason, finding the restroom is notoriously difficult.  If I ask where a restroom is and someone tells me "in the back," or "down the hall," for example, I struggle with the unclear directions.  Where is "the back" in relation to where I am?  Which hallway?  And once I find my way there, and exit, relocating my family or friends again is equally daunting and takes extra time.  The whole place looks completely different coming at it from a different angle.

There are some great tips in the link I shared above, but I would also add a few more, especially if you suspect your child with CP has place blindness:

- Teach your child to identify landmarks that may help them orient themselves in public.  ("There's the park with yellow and orange play equipment, that means we are almost home.")

- Make sure they know how to get in touch with you if they need to.  (If possible, teach them to memorize your cell number.)

- Send them out with a sibling or friend when possible, not alone.

- Make sure people who interact with your child on a day-to day-basis (such as teachers) know this is an area of concern, so they know to look out for your child, especially on field trips.

It's my hope that by finding this, you know that you are not alone.  There is a name for what you're feeling and there are ways to learn to cope.  By preparing and understanding that this is an area where you or a loved one might struggle, you'll be better equipped to function in your surroundings.

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10 comments:

  1. I am autistic and place blind. I cannot find my way around a place without having been there before or having a navigation guide. I also have no internal clock, so I have to rely on external clocks.

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    1. FlutistPride, I can definitely relate, though sometimes, even having been somewhere before is not enough to help me orient myself... I bet it's helpful for you, then, to carry a cell phone with the time displayed prominently, or to wear a watch.

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  2. TONIA! My response is going to be so long that I'm going to have to split into two comments, but I can relate to this post SO WELL...I can't even type quickly enough to get my thoughts out! I have an AWFUL sense of direction. I remember once in high school Spanish class, we had to work with a partner to give directions (in Spanish) to our high school from the center of town. This was a route that I took EVERY DAY, but I had no idea how to give those directions. My partner had the opposite problem - he knew the directions, but couldn't say them in Spanish, so luckily we made the perfect team. He spoke the directions to me in English, and I translated them into Spanish. ;)

    When you were trying to research place blindness and brain injuries, you might have come across a mention that people with CP (particularly spastic diplegia, as it's highly associated with that optic radiation damage - but other types too!) often have difficulties with spatial skills and vision perception even if their performance and verbal IQ scores are normal or superior. I was researching this too, out of curiosity (because my spatial skills leave something to be desired ;) ) and I found several studies on this.

    And as a neuroscience major, I can actually validate for you that there is a neurological reason underlying these spatial issues that unite so many of us. :) Particularly if you were born prematurely (and thus likely have PVL/spastic diplegia - although I'm sure this often holds true for other forms of CP as well), there was likely some damage of the optic radiations. These are structures involved in visual processing - so your visual acuity might be fine, but the information gets disrupted before it can actually reach the visual cortex in the back of your brain. Once this information makes it to the visual cortex, it then exits via two different pathways...either the ventral stream or the dorsal stream.

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    1. K!!!! Oh gosh, I was so happy to get these comments, you have no idea!!!! That Spanish assignment you mentioned gave me anxiety just thinking about it LOL! How horrifying! Glad you were partnered with someone who knew his way around!

      It's weird because I actually assumed (haven't actually seen this mentioned anywhere officially) that my issues with spacial navigation) have to do with CP, but I never connected that with Place Blindness.

      I was born prematurely, too. ALL the things you mention, not being able to gauge distance, walking on uneven ground, etc. JUST LIKE ME. Also, I had a question for your science brain: Do you think this extends to depth perception issues as well? Because I have completely terrible depth perception! (More in the next comment.)

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    2. I'm so glad you found this insight helpful! I was so excited when I found out too. :)

      YES, that Spanish assignment was crazy! And it was even mortifying because our conversation was recorded, and out of all the people in the class, our teacher chose OURS to project to everyone after! She was laughing because our conversation was half him speaking English to me and half me repeating him in Spanish.

      And yeah, I was kind of the same as you. I wasn't 100 percent sure I could attribute my awful spatial skills to my CP (as my dad and brother also have sub-par spatial navigation skills, so I figured it might be genetic) but I always wondered...especially because I had some issues with my eyes that I knew were a side effect of CP.

      I am all of those things too!!! AND YES. I meant to mention that as well! I have awful depth perception too (I wrote a post on it once actually!), and I always assumed it was because I had some mild intermittent exotropia (strabismus - ~75 percent of people with spastic diplegia have it...again due to that optic radiation damage) which was fixed surgically when I was a child. The brain areas I was talking about definitely extend to depth perception as well, though; depth perception is a function of the dorsal stream. :) So you and I probably both have some issues with both our dorsal and ventral streams.

      P.S. I'd love to connect with you more, either on facebook or via email!!!

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    3. OMG how mortifying re: Spanish!

      Ooh, glad to know the depth perception thing has some basis somewhere that makes sense. My whole life all of these things have felt random and confusing - so nice to have an explanation that makes sense! (I have strabismus, too - both eyes, pretty severe. I've never been able to accurately take a vision test, because if I cover one eye the other one can't stop moving.)

      Yay! Feel free to come find me on FB and we can either connect there, or we can exchange email addresses via PM.

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    4. If you don't mind me asking, you mean that your eyes are moving as in drifting, or moving as in tremoring? My science brain is curious, because if it's the latter, that's nystagmus...and I read a study that said that people with spastic diplegia/PVL are more likely to have latent nystagmus, which is nystagmus that is considerably worse when one eye is covered. :)

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    5. I'm not sure how to describe it? They'll dart back and forth really fast (side to side.) I can still see, but it's impossible to focus, because the uncovered eye absolutely will not hold still.

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  3. (continued from last comment because I write too much! ;)) Many, many people (myself included! and it sounds like you too) with CP have dorsal stream dysfunction, ventral stream dsyfunction, or both. In our case, it seems this dysfunction is a result of that optic radiation damage, but in one of my classes we learned about two individuals who received direct damage to these streams, and that's when you tend to see particularly profound deficits.

    Anyway, your dorsal stream is your "where" stream. It helps you process movement, guide your actions, and detect the location of objects within your environment. You mention that you have trouble fitting your surroundings into a larger context (SO DO I, times a million!). This could be related to dorsal stream dysfunction; when scenes are complex, your brain can't process visual information as well. Dorsal stream issues are also associated with getting lost in crowds and finding people in crowds. You also might have trouble figuring out how far to reach for things, walking over bumpy ground/steps (separate from motor issues), and walking/talking simultaneously.

    Your ventral stream is your "what" stream, and it's important for object and place recognition. I believe this is what you are referring to when you talk about place blindness. People with ventral stream dysfunction might have issues recognizing faces (e.g., could this be what happened when you thought you were following your sister?), recognizing objects, and SPATIAL NAVIGATION. I was laughing when I was reading your post because I can relate SO MUCH to your spatial issues. One time, in college, I got lost on the first floor of my building trying to locate a classroom that I'd been to six times before...all because I walked in using a different door than I usually did. LOL. I had to ask another professor for directions and she must have thought I was *nuts*. ;)

    Anyway, sorry for the novel, but I hope this is validating for you, and feel free to spread the word to others with CP who might have difficulties with spatial navigation! It's weird, because I feel like I shouldn't get excited over brain damage ;) but somehow it's comforting to know that there's a neurological reason for what we experience.

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    1. This is all SO good to know and I published it ASAP because I know there are more people than just us who deal with this, and will really want to fit this into a context for themselves, too. THANK YOU for sharing this!

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