After witnessing Maggie’s struggles with communication, I’ve become more aware how complex communication really is. People who knew her when she had access to a few words are still, as are we, confused about how it can be there and then next thing you know, just as easily, be gone. That’s a regular point of confusion about Rett Syndrome – How does a regression happen at all?
In describing it recently, I think I stumbled on a simple way to explain why/how something like that would happen. I’m putting this caveat in here: I made up this explanation. I used no science or journals or peer discussion. This is just a regular guy inventing some way to describe regression to people who don’t think about it all the time like we do.
Make sense? Cool.
This illustration is not based in science so much as it’s based in my understanding of the science. In other words I’m not an illustrator or a scientist. But, as I comprehend it, a typical brain has typical neuro pathways and a typical amount of them. I drew them as squiggly because they are basically electricity which is basically lightning bolts.
A stroke victim would have started out with typical pathways but the stroke would have broken some of them. So, a stroke victim will have to train different pathways to accomplish the tasks the old ones did. A stroke victim’s neurology looks a little like Weird Al Yankovic in my illustration.
One issue they’ve recently uncovered in Rett Syndrome is that there are faulty pathways which I illustrate as extra, superfluous pathways. That makes it very difficult for the information to make it to the intended target. That is my explanation for why sometimes her body works, sometimes she can muster up a few sounds, sometimes her hands and arms are calm, and why when there is a cure the symptoms would be reversed – because all of those extra pathways will disappear. It’s also my explanation for how regression works. That before all of the extra pathways are created, there are a normal number of pathways, allowing that early stage development to be more or less typical. But as she got into higher learning, the extra pathways muddy the communication from her brain to the rest of her body.
Understanding that explains why communication is so complicated. To speak requires her lips, respiratory, memory, tongue, vocal cords, and more. To control each of those things, her brain would need quick, easy access to pathways that are muddied up so significantly it becomes near impossible.
It also explicated why therapy can be so effective. In stroke victims, therapy retrains new healthy pathways to accomplish the same task as the previous pathways did. It’s not always as effective because it’s not always what those pathways were intended to do, nor is it necessarily the only job those pathways have. In Rett Syndrome, similarly, forcing a pathway to work takes a lot of time and a lot of repetition and a lot of effort.
Some day there will be a medication that will make that retraining much more effective. Until then, we keep going back to the drawing board.