I had someone ask me the other day how the non-function of a stroke survivor’s affected extremity progresses from the day of the injury to the brain. He also asked what it felt like onward from that first day that changed my life. This is by no means an expert’s opinion, just my perception living through it and what I can recall.

The day of my stroke, February 19th, 2014 was damn surreal with memories and some flashbacks of key events e.g. the ambulance ride down to Honolulu ER way down from north shore of Oahu, being wheeled in a gurney just like in the movies to have my first of what would be many MRI & CT scans. Also recall not having any feeling on my entire affected left side being poked & prodded by the neurologist throughout that fist day in the ICU. Even a fabric tracing wheel rolled down my arm which I couldn’t feel!

One vivid memory I had was knowing for sure I could just swing my legs out of the bed and walk out of there. The song playing in my head was ‘I Don’t want to Die in the Hospital’ by one of my favorite artists, Conor Oberst, where he writes about a friend he breaks out of the hospital, ‘help me get my boots on, help me get my boots on…’ Turns out, this overconfident behavioral change common in that phase and I certainly had.

My brain, being in cortical shock just wasn’t in reality of my ‘old’ active young self.  My neurologist kneeling at the side of my bed saying that I most likely had the worst thing that will ever happen to me, and I wouldn’t be just walking out that afternoon. My brave loving wife, Jeanie was by my side the entire time.

Likely trillions of brain cells starved and died in the wee hours of that morning where with today’s medical technology, very little could have been done as I was at least a two hour round-trip to the hospital. And Hawaii unfortunately didn’t have a Mobile Stroke Unit sent my way, and who knows if it would have helped.

Post-stroke, months turned into years and certainly one of my biggest lessons was much more damage was done by myself following the stroke with habitual training! Why? It’s known as ‘Learned non-use‘.  I’m right-dominant. Having my left-side affected, my brain ‘learns’ over time that my right side now becomes über-dominate since it’s getting by just fine and says, left-side you’re ‘dead to me’. In other words, ‘learned non-use’. Below a diagram shows the progression showing this. As time passed into the chronic phase of recovery, [in my opinion] I realized there really are two ways the brain recovers, doing something it must do to survive e.g. like the cave man still needing to hunt for survival or a monkey needing to feed itself or through fun & enjoyment e.g. playing the guitar  or throwing a ball. Go to PT over and over, but every day repetition is vital and one’s brain has to have a motivation to keep at it day in and day out. Every single thing from taking my first step to being able to at least raise my left arm involves re-learning over completely from scratch where the neuroplasticity of the brain must occur. Most of these movements were learned when I was a very young child.  Now I’m re-learning again, where it’s far more difficult to.

Reading this you my think it sounds as I’ve given up.  No, wouldn’t go that far as I continue to use my hand & arm quite a lot e.g. turning off lights, holding things down on a counter or table, and helping the other hand & arm even if it’s only ‘going along for the ride’. No doubt this all is of some benefit and I still have some strength along with nerve impulses and reflexes, which is encouraging. Also, therapies such as CIMT (more) may still be in my future as they’re examples of some level seen of recovery years later with some patients, but important to understand and must keep telling myself there’s no silver bullet, being the hardest of all.

Learned non-use and regaining movement, it sure is a bugger!

Some things are in our control and others not. Things in our control are opinion, pursuit, desire, aversion, and, in a word, whatever are our own actions. Things not in our control are body, property, reputation, command, and, in one word, whatever are not our own actions.

~Epictetus (Stoic philosopher)