My Account of Day one to Now

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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)

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I have gained lots of wisdom in my personal journey and write this blog so that others may hopefully benefit. Stroke recovery is all about making the most of the time following.  If you didn’t hear this from doctors or therapists, I’m here to tell you it’s most critical. Unfortunately, it wasn’t drilled into my head as much as it should have been and I pay the price for it every day. Let this not happen to you.  Best I can offer is this page my wife & I put together with important lessons learned. And check out my page here as well for various resources.  This will be an ever-growing list as I continually come across new ones and I will do my best to then expand upon and reference each in various posts. If in the Seattle area, I would very much be up to meet and share experiences as well!

Skiing 2018

For the third season, I committed to skiing again with ODFA. It’s shaping up to be a decent one thus far.  187″ has fallen on Steven’s Pass so far, which is impressive!  As I write, mid-mountain has 89″, so decent. ‘Cascade cement’ as locals call it, where cold temps and a nice dump of fresh powder, then days later temps will rise, bringing rain or premature melting. Makes for some heavy, wet, and very hard to turn in the snow. Sorta curse around here, but very occasionally you get lucky to time things perfectly, being up there on a blue-bird day with great snow. I’ve seen it a few times, one of them being early last season.

Last year was very tough for me. Even though I was going to PT, I lost considerable muscle mass and worse of all, my stamina just wasn’t there, is the worst combination. I would fall continuously since I was weak.  Then, all the work going into trying to get back up was incredibly exhausting. Each run I recall falling 3-4 times, which was so frustrating! Ended the season thinking I might hang my skis up, adding to my growing list of activities I no longer participate in.

Mentioned in a previous post, this year my PT, Aaron and I made a conscious decision to do much more to prepare for it. Squats, balance board, cycling, jumping off things have apparently helped greatly! Last Sunday being my first day up, miraculously, I didn’t fall once all day! This boosted my confidence and certainly energy to spare! My instructor, Mike is again one of the more experienced ones, which is really fantastic.  Looking forward to what the rest of the next six Sundays bring!

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