I was wonderfully fortunate to be able to visit the NIH this last weekend. It was a spur of the moment trip to go up and see what they were doing with Annie. I’d read the synopsis of the work, paid some attention, but really didn’t think it would be something that helped Annie – maybe others down the line – but not directly improving ours lives. I could not have been more wrong.Those working at the NIH and the visiting team from Germany are some really smart people and they are passionate about brain physiology. I’ve always said that watching the process of Annie’s redevelopment is fascinating, I just wish it wasn’t happening to us. This last weekend I had the opportunity to learn the “why” for what I observed.
I learned a couple of neat terms (More applied science here - http://jp.physoc.org/content/543/1/317.abstract ) :
· Inter-hemispheric Inhibition – All of you have heard the term “neglect”. This is the way of saying the brainwaves are still bouncing around the affected side or the injury but their established connections are lost or damaged and the waves don’t know where to go.
· Neurotrophic Factors - are a family of proteins that are responsible for the growth and survival of developing neurons and the maintenance of mature neurons. It is said some of the development stops around 25 years old. I believe in my case it was around 18 as I seem to want to “live” in that freedom space.
· Ipsilateral and Contralateral – Same side and opposite side and referring to effects we observe on left and right injuries.
· Heterogeneous nature of stroke injury – I’ve always said “stroke” is a bucket where all brain injury descriptions are dumped. I like “brain attack” better as it seems to make more sense. I can relate that to heart attacks with their wide range of outcomes. But don’t think just because radical intervention wasn’t required that your survivor isn’t having a tough time. They may have a tougher time than some one with a total hemispherical loss. It all has to do with the way memories are stored.
But the really mind changing discussion was around how we learn and retain our memories. The neurologist explained to me that our memories are pictorial. Best described as like a hologram. It appears possible to rebuild those holograms and of course that is our role. If we as caregivers do too much for our survivors we actually are no longer helping, we are holding them back. Saying no was not the hardest part of my task list but it was up there. Making Annie do the things she didn’t or thought she couldn’t do was tough. It was so much faster for me to “just do it”. You can’t. You have to stay tough. Make those "holograms" rebuild.
Last but not least, I had a very interesting discussion regarding craniotomy and radical intervention. Annie had a craniotomy. The surgeon literally removes a plate from the skull and the brain is allowed to swell out. It essentially keeps the inter-cranial brain swelling from depressing the spinal cord or mashing the still healthy side of the brain. Even with an outcome as good as we have had the doctors are still calling the craniotomy operation controversial. Apparently the results are not always so good.
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