Anosognosia

Such a big word! So hard to say and remember. Used to describe to forms of delusional expression in someone like Pop, with his injury to his right parietal, to someone suffering full blown schizophrenia. Anosognosia certainly has serious implications for someone with schizophrenia as in denying their illness means they won't take medication. I won't go into a further description of this aspect of Anosognosia as it is the better documented. You can "google" it !  Pop's version is probably very common too, considering just how any people have strokes. But as there is no cure as it were, there isn't much out there in how to deal with it.

The main thing that I'd like to talk about in this post are the various things that we use in helping someone in my Pops situation.

Because the one piece of help that we didn't get from any neurologist or doctor was just how to work with and not against someone with this condition. We needed to learn not only how to understand what was going on with Pop's thought processes post stroke but also how to relieve his anxiety about what he saw as inconsistencies in our response to something he considered fact.  By "we" , i include not just my mother and I, but all of those helping him, his caregivers, his friends and wider family.

So back to anosognosia. That big long word translates to "denial of illness".

While you might think it describes a psychological response (denial) to two conflicting views of the same sensory information, It's a little more complicated than that. It doesn't really have anything to do with denial as a psychological mechanism. Anosognosia arises after an injury (or perhaps a mistake to the genetic code) to the brain in the parietal and frontal lobes.

There is no talking therapy, no medicine, no retraining another part of the brain, that heals or transforms this injury into something positive. It just is. You go on from there.

Wild harebrained ideas zing through our brains all the time, don't they? Sometimes they seem like an inspired and creative answer to a question that we are researching. Or perhaps it is some otherwise totally incongruous and outrageous inner response to say a push on a crowded train? What is driving this process? The left hand side of the brain. An incredible mixture of language, memory and reason. The left overflows with information. Coming in, going out, stored in those places that it has dedicated to short term memory, long term memory, all that.

For the vast majority of us, our right parietal takes in this information and comes back with its judgement of the situation. It's the part of our brain that fits that piece of information arriving in our complex sensory system and says: Yes ! That fits in there. No! That looks that looks like it might fit in there but it really goes into that spot. The right parietal is basically the part of your brain that is building your reality with  all of this sensory information: sight, hearing, touch, taste, running that through a check with the various areas that store memory and updating the general picture. Building our reality instant by instant with the information that it has on hand, constantly fine tuning "reality" as new information comes on board. Amazing!

Pop's right parietal, his "anomaly detector" simply can no longer counterbalance his left hemisphere's workings. This can't be fixed/regrown nor its function taken over by another part in the surrounding area. It doesn't get "better".

Just think how many variations the left can come up with as to how to fit in this or that piece of information into a general picture? Without a "general" picture we can't function. So what does it look like when only your left hand hemisphere holds sway over building that very important general picture of reality?  Well the answer is that sometimes it can put together a pretty decent picture. And sometimes it can't.

We see that Pop's version of his present reality is best, when he's been up awhile. Is physically sufficiently stimulated to feel "awake" but not so over-stimulated as to feel overwhelmed and therefore tired.

That golden time is usually around meal times, before and after. Perhaps at the very beginning of a trip outside. Where he feels the air, a breeze, sees the sky! Or having started some basic conversation with a visitor, allows it to develop. This can take an hour or so. Its akin to "priming the tank".

When is the left furthest from the mark ? When Pop is just waking from either deep sleep or a nap. When his left hand brain has been using his dreamscape to construct his reality.

How do we recognize the anosognosia in Pop? Simple stuff really. Pop might say that he is just going to get up and wants to take a walk, stretch his legs. That he wants to go use the bathroom. That no, he doesn't need a new wheelchair because he will be out of bed soon and won't be needing a wheelchair!

It makes things like his ability to participate in any kind of physical therapy, impossible. I mean why do 100 leg lifts if you didn't think there was anything wrong with you in the first place? Why try to stand up when you can stand up if you want to? You just don't want to at the moment.

One of Pop's best explanations of why he doesn't try and walk is that his doctor(s) told him he was to stay in bed and rest. That was what he was doing. Staying in bed and resting. Following doctors orders, he said.

101 reasons why whatever reality he has built at that moment is definitely the right one. He fits all the facts in from his point of view with great, great creativity and makes it all sound very, very plausible!

But what do those of us around him do when one of his versions of reality is really way way off ? And is causing him great distress ? This can happen and it's really heartwrenching.

At this point, I'd like to introduce the writing and practice of Dr Xavier Amador

Dr Amador is a psychologist best known for his help for the families, caregivers and "responders" (police and emergency medical teams) that work or have to deal with schizophrenics. Schizophrenia. Another Big Word. From my reading, schizophrenia seems to be something that comes from an injury, a tumor or malformation of the frontal and parietal lobes. Where have we come across that before ?!

Dr Amador's suggestions in "I'm Not Sick! I Don't Need Help!" offers the only working therapy model for someone with anosognosia. From the start, it looks pretty simple:

Listen, Empathize, Agree, Partner.  "LEAP! "

He says it's all about building trust between yourself and someone dealing with anosognosia.

The first thing is to offer an ear. We listen. We sit there next to him, take the time and just listen.

The second thing:  No challenges to his version of reality. We do not say "That's not true, Tal!"

Pretty garden variety suggestions so far aren't they? Now comes the hard part.

Third thing : We agree. Simply that. Even the most spectacular and unbelievable of the realities he is describing, we agree to their possibility.

Fourth thing:  We offer partnership in looking into the situation further. Helping check the facts. Being his legs, arms, eyes for a moment. Questioning like a journalist. Pop helps ! Pointing out if you have tried a leading question. He's not amenable to those ! His story emerges. Not your story. His.

When I use the word "story" that already sounds like i'm talking about something fictional, doesn't it?

And that's one of the difficulties. Because you don't want to just give lip service to someone like Pop. He can read that kind of response a mile away. No, you put preconceptions aside and enter into his world, his reality of the moment. This happens at his pace.  He is the guide. You are simply the visitor, the cartographer of a new city, looking around, making a map with names of streets and avenues and metrolines. Putting in the landmarks and centers of interest. Showing curiosity for even the littlest side street and noting even the mundane of daily life. It's not all museums, libraries and the Eiffel tower!

The reward is mutual trust. In dealing with someone with Anosognosia, that's all you should be looking for. It's an quite a positive outcome for something that appears so dire at the outset.


Lissa, in a cold wet and grey November in Paris. Missing her Pop. And her Mom!

from "The Atlas of Experience" by Louise van Swaaji, therapist, Jean Klare, graphic designer and cartographer and David Winner, writer.