When ‘Perfect Storms’ Pass

There are moments in life when we are given pause. Maybe talking to a child about a difficult topic or helping a friend through a tough situation, maybe even working through challenging moment on our own could all be reasons why. It’s one of those moments in life which has always fascinated me. Something external and seemingly innocuous occurs, causing an alarm on some internal level, which in turn triggers an intense and serious response from our neuro-transmitters. Have you ever stopped to consider the amazing facets like these within this mechanism we call “the human body”? It’s pretty incredible!

I know. I need to get out more. 🙂

One of my current patients gave me pause yesterday, and did so quite unintentionally.  I went to sleep thinking about it last night and woke up this morning with his words still on my mind. My own life has been complicated and challenging lately, both in the office and at home, and this was definitely an opportunity to step back and consider how much worse things could be.

My friend “Don” is in his mid 60’s and has been enrolled in our Vision Therapy program for a little over a year.  A graduate of Massachusetts Institute of Technology, he had a long and distinguished career in the computer development world beginning in the mid 1980’s and retired in the spring of 2009 a millionaire. Not long after his retirement, he suffered a serious medical issue which resulted in needing a kidney transplant.  Considering the seriousness of his condition, he was fast-tracked through the transplant administrative process and was on the operating table within a few months of discovering he needed a transplant. At the time, he was told the recovery and rehabilitation process would last between 3 to 6 months and he would be able to enjoy the fruit of his life’s work by vacationing with his wife, watching his grand kids grow up, and endeavoring into whichever philanthropic direction suit his fancy. That was January 2010.  Sadly, the kidney he was given was infected with West Nile Virus which it’s hypothesized the donor (who was deceased in a car accident) contracted from a mosquito bite and never knew simply because he did not live long enough for the symptoms to manifest. Under normal circumstances, symptoms of West Nile are similar to contracting the flu, and chances of recovery in healthy adults is fairly good.  Unfortunately for Don, his transplant required a lifetime of immuno-suppressant medication so his body accepted the kidney, making fighting off the West Nile Virus near impossible. Not long after his surgery, he and his wife were told of the donor’s infection and of the upcoming fight Don was facing. Within a week, Don was knocking on death’s door. He was unconscious, febrile, suffering numerous seizures per hour, on life support, and was administered last rights – twice within a week.  In his words, he was “the perfect storm”. When he tells his story he quickly quips how he was “too stubborn to die”.

Fast forward to early 2016, Don is wheel chair bound and alternating between diplopia and high amplitude vertical nystagmus, but otherwise has made a full and miraculous recovery.  On his first day in our therapy room, Don made his goals very clear. He wants to walk again.  He has the muscle structure and strength to stand; however, has a difficult time maintaining his balance for more than a few seconds because the constant and continuous vertical shift. His body tries to compensate, and then over compensate, and he simply cannot correct it quick enough to maintain an upright posture. In his words, he is “a math guru, and yet he has lost count of how many times (his) face has hit the ground”. He chuckles to himself every time he reminds me of this fact.

Much of Don’s vision therapy regimen has been centered around his VOR – or vestibular ocular reflex.  We’ve been coordinating efforts with his physical therapist, occupational therapist and his aquatics therapist and in some form or fashion, all of his therapies have involved a head drop, vertical head movement, full body inversion, and variations of visual gaze since the amplitude of his particular nystagmus is quite gaze dependent. Don continues to be an active participant in the planning process and not just from a patient perspective, he applies his “guru” math skills to his everyday home activities, having engineered a way to mathematically measure the changes in his amplitude from day to day and plot it all on a line graph.  Every week he prints out his measurements shares them with me during our session, and every week he reports we are a few 100ths closer to “full foveation”.

As an aside, I’ve written many times before of my propensity to become fascinated with the peculiar, bizarre, and eccentric. I’ve never really figured out why, although I suspect my growing up in San Francisco is widely responsible. I’m drawn to people who are different, unusual, quirky, and perhaps even surprising. Throw in a little kindness and integrity and you’ve got a friend for life.  I know this about myself and have learned to embrace it.  Working with Don has brought this quality out in me ten-fold and I look forward to being in the presence of his brain pan every week.

Anyway, Don’s progress in VT has slowed a bit recently and my sense was he was becoming frustrated. A lot of his VT planning has been a process of exploration into what is effective for him and what is not.  That last sentence could apply to all patients, but in Don’s case, there is no “typical path” as perhaps is the situation in less complex cases. We literally are writing his rehabilitation story word by word and letter by letter. As he has become stronger and worked through his therapy regimens, his nystagmus has reduced in amplitude by close to 90%, in his estimation. He has recently been standing, with the help of a standing frame, and even has taken a few steps with the help of a walker. As he says, much of his frustration stems from the fact he is “so close”, but getting over this final hump – achieving the final 10% of progress – is the hardest part. He then quickly reminds himself, and by proxy, me too, that storms pass and brighter days are in the future.

Many folks I completely admire in VT have shared how we will gain so much more from our patients than they gain from us. Don is truly the embodiment of this statement.  As long as he keeps fighting for the ability to stand, walk, and dance with his wife, we will keep fighting for him, and with him. Standing and walking are a simple actions which we often take for granted, and which he is trying to regain. Don demonstrates every day how important it is to keep moving forward and seeking positive progress even when the storms are upon us. As he was leaving yesterday he reminded me of his favorite mantra: “Tomorrow is a new day”.

He had no idea how much I needed to hear it.

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Posted on November 17, 2017, in From My Perspective.... Bookmark the permalink. 3 Comments.

  1. Hey Robert, I’m thinking of you. My mom had her second stroke (in 13 mos)5 days ago, and it was in exactly the opposite place in her occipital lobe as the last one. This means that last year she developed hemianopsia on the right, and 5 days ago, hemianopsia on her left. Oh boy. She’s struggling, because she is mobile, can talk, everything except see much. But today, I ran into the husband of a patient of mine who recently discontinued VT after two years. This patient suffered a terrible bike accident, and wasn’t expected to live. By the time I saw her, she could move, had developed strategies ( with his help) to manage life, and pretty much was hiking, etc. Except for one thing. She was still aphasic. This incredibly bright woman and I developed alot of charades, and sometimes we both would get pretty frustrated. But she brought so much to me and to our VT room!! She’s continuing to work with a music therapist, and uses phrases now sometimes!! The husband, when I ran into him, asked me how I was doing (probably didn[t look too good) and I told him the story. And he said, “Remind your mom that most of all, she can still communicate. That’s the hardest loss.”

    And, like you, I was instantly reminded that it could always be worse. I’m sometimes not sure who helps who the most!! But anyway, I’m still keeping you in my most positive and peaceful thoughts. J

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  2. Ah, one of our tbi patients always said, “every day is a new day!” This segment of the vt population, while challngng, is also often the most encouraging. Thanks for sharing this story!

    Like

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