Thursday, May 14, 2015

Cerebral Palsy past and future.

When I was young, even before we started our adventure with years and years of rehabilitation, a doctor back in Poland apparently told my father that my Cerebral Palsy was on the lighter side, that my prognosis was good and eventually I should be able to walk. I don't know what he based that belief on. It was over thirty years ago. Neurologists back then knew very little about causes and cures for Cerebral Palsy, so how and why would he able to speculate and make any kind of prediction? Not that we know much more today- and the brain- how it regenerates and relearns remains a mystery still. What we do know is that many assumptions and beliefs we've held as far as CP was concerned were not accurate. Modern science apparently suggests for example that most cases develop at some point in the womb and not at birth - which was something taken as a fact for generations. Given that, thirty, forty, fifty years ago the science was simply not there, how can any method, protocol and intervention developed eons  ego withstand the test of time when we begin to realize how little we have known back then and how much we still have to learn.  Perhaps in the early 1980's the doctor wanted to give my father hope so he'd stay on the message and not give up on the countless therapies and approaches that follow. But it had an adverse effect on me. My father would bring up the doctor story every time he felt I wasn't dedicated while doing my exercises or I wasn't progressing fast enough. The doctor said I would walk (again, based on what a hunch?- I have spastic quadriplegia, I'm not sure how anybody can think that that is "light")- and I wasn't walking, so obviously I wasn't doing something right, it must have been my fault.  I've decided to bring it up after noticing a blog from Andrew Sutton where he wonders if the Peto method will ever see brighter days again and why Bobath concept generates much more interest.Those who know me and my writings know that I'm a big supporter of Conductive Education as a method that I feel caused significant improvement through my teens, so I do hope that Conductors will read this text in the proper context. Both Peto and Bobath are very "old school" approaches to Cerebral Palsy. I do think that next big development in the field will not come from a method put together through arbitrarily established set of rules of protocols, but from science. Look at the great work Michele Shusterman and her group is doing to push for CP research in the US , what's effective, what isn't, and what should happen next. It's about time we understood how the brain with Cerebral Palsy works and how to "fix it". I hope for her sake and for all of ours, with the right kind of attention and plenty of funding- we can actually develop treatments and cures.  Peto might be a fascinating figure- but isn't it strange that in the XXI century, in the age of internet and cellphones we still look back at his work in the 1940's and still expect it to be as relevant as it was in the 1980's? Can't we come up with something more updated? Here's another story. When we first started my rehabilitation in the early 1980's therapies based on Bobath with an exercise mat and a big bouncy ball was the first thing I was started on right away. Peto was something we've heard about when I was six. Parents were telling each other about it as if it was the next big thing, a new advanced approach, a crave everybody wanted to be in on and all wanted to try. Bobath was however something everyone started with, what we associated until then with the generic term "rehabilitation". And in many ways today it seems to be everything that Peto is not. Although Bobath is as much under fire according to the majority of RCT's there is at least some research and some data for it. Easily accessible: Google it.  I've recently read that Bobath as a method is evolving to an extent that many practitioners aren't even sure if it's still Bobath or if it's something else now. Conductors on the other hand hold on to the precious teachings of a man that had some success after World War II and has been dead for decades. Bobath claims that parents are part of the process of setting goals for the children, Peto is secretive.  My parents were never allowed on the floor and what they were able to replicate comes from the shreds of what they've seen and what I told them. The reason and methodology about it was never revealed. In full disclosure I must say that the name "Peto" was never brought up when I was a boarder at the Institute. If I was following someone's teaching I was certainly unaware of it. I didn't even know at the time if had anything to do with the program or if he was some communist revolutionist they named it after. Because it didn't matter. It wasn't until many years later when I reentered the Peto world in a different role that I came to notice how celebrated this man is, like a good spirit, Santa Claus or Father Time, kind and patient, loving all children like Walt Disney. A few times since I wondered what he was really like but then I questioned if that even matters.  To its peril, while Bobath feels like a straightforward "method", Peto comes across as a lifestyle at best if not an ideology. I'm extremely optimistic every time I read through the discussions that Michele's team has. It's time we stepped into the future. It's 2015. The role of both Bobbath and Peto and their place in history will be determined by the science of tomorrow. And it might be that this place is just that- history.

1 comment:

    'Whizz for atoms!'
    As any fule know: