Stroke Rehab: an Arch with fading margins

By December of 2006, I was in midst of the first of several experiments with cognitive therapy. One segment involved design and production of “pictoral” representation of my experience with recovery from stroke. The genesis of this project was my participation as “honorary stroke survivor” in the Austin Heart Walk- a fundraising event. Within the context of that role, I used images and narrative about my experience with rehabilitation as components of what proved to be a remarkably effective e-mail marketing and on line fundraising campaign.

This success of the Heart Wak campaign lead to additional occasions to stitch together images and narrative of my experience : first, a thank you card to donors who supported my efforts to raise funds on behalf of other stroke survivors; and then, a “thank you” card to the people who provided “life-altering” therapies and a recovery to a quality of life beyond even the "best case" expectation.

In the midst of all this activity, I passed a few significant mile markers: the one year anniversary of my stroke, a return to a modest routine of jogging and swimming, and a move into a new, independent living situation. I also ran face- first right into several walls: the persistent aggravations of the spastsicity(uncontrolled spasms and cramping in my left leg) , the side-effects of the medications for that condition- that intensify and yet obscure the precise extent of the lingering cognitive impairments from my stroke.

While “pasting” several photo images side-by-side [see above] I could not help but to notice the presence of arches or finish lines in several of the photos and to recall the reference to an Arch with "fading margins" in a poem [Tennyson's Ulysses] I had dissected in preparation for a British Literature class I taught t(inflicted upon) tenth graders as a teacher many years ago.

A brief, Google-aided search returned Tennyson’s use of an arch with fading margins as a metaphor for the challenges unique to the late stages of a long journey – the parallels of that metaphor to my present circumstance were more compelling as I revisited the circumstance and implication of each arch or finish line. In my reality, each finish line was more like starting line. These snapshots, and more specifically the arches capture my experience with recovery from stroke: Arches with fading margins, indeed!!

“Yet all experience is an arch wherethro'
Gleams that untravell'd world, whose margin fades
For ever and for ever when I move.
How dull it is to pause, to make an end,
To rust unburnish'd, not to shine in use!

Tho' much is taken, much abides; and tho'
We are not now that strength which in the old days
Moved earth and heaven; that which we are, we are;
One equal-temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.”

Alfred, Lord Tennyson

My enigmatic, elusive lucidity simply explained

Today will be my first day in 9 months when I will not be medicated for treatment of on-going problem with spasticity - a condition caused by injury to area of brain [basil ganglia] that controls transmission signal via spine to muscles. In my case, the problem is "too much" signal or "tone" such that muscles on my left affected side are in a constant flexed or contracted state. Over the course of the day, the results can be both distracting and painful - the symptoms are very similar to an advanced case of Sciatica: radiating pain and numbness from hip through to the toes. The most common treatment for stroke-induced spasticity is a drug called Baclofen. Baclofen [most commonly prescribed for patients with MS or spinal injuries]- acts on the central nervous system (CNS) to produce its muscle relaxant effects [in theory via an amino acid GABA]. Its actions on the CNS inevitably causes some of the medicine's side effects: both cognitive (severe drowsiness, confusion) and physical (diminished reaction speed and loss of coordination). As with any medication, one weighs the benefits of the relief against the complication/consequences of the side-effects.

After six months of unsatisfactory relief from Baclofen therapy, the complications and consequences of the side-effects forced my hand to seek alternative paths. The alternatives were few [handful of other meds that had comparable, significant cognitive impact; some were impractically invasive [e.g. surgically implanted baclofen pump]. After consulting several neurologist I've received the same opinion: the nature and extent of injury based on brain scan images--as well as my limited progress to date with oral baclofen therapy-- is such that I should not expect improvement along the lines I have enjoyed with recovery of motor control of left leg, arm, and hand.I have repeatedly been told me that the best I might expect is 5-15% reduction of intensity of problem and that almost all mainstream oral therapies (like Baclofen and zanaflex) will have the side effects I'’m experiencing, as they all impact the central nervous system in a fairly indiscriminate way. This was not encouraging news. [Note: I've read some theories re differences in potential for recovery between "new" and "old" regions of the brain - theory being that the most recently evolved lobes of the brain are comprised of more highly evolved more "adaptible" cell types- must admit: "basil ganglia" sounds primordial doesn't it?]

Meanwhile....Trying to reconstruct some semblance of the life I left somewhere around mile 24 of the Chicago marathon on October 9, 2005, I had decided to return to speech/cognitive therapy to address "performance deficits" noted in testing --as well as problems I've ’experienced with losing cell phones, glasses and keys or at bank machines, some websites and my god damn cell phone navigating menus and processing visual instructions in new or distracting environments. The therapist with whom I had worked previously quickly arrived at the conclusion that my levels of energy and attention were significantly impaired by the medication based on comparison to performance on similar or same tasks last Februaryary before I started taking higher doses of baclofen for treatment of spasticity. The challenge now: differentiating between residual cognitive deficits from stroke, the side effects of the anti-seizure medication [Kepra] I will be taking indefinitely and the [now] escalating pain and distraction from my body's reaction to withdrawing from several months on high doses of medications that suppressed irregular signal from a (permanently) injured area of my brain. It may be a "white-knuckled" quest - but I'm on a better path - of that, quite simply, I'm sure.

How & why miracles happen on 32nd Street

[If you click on image of Dec8, you can watch a video of the progression made between nov22nd and Dec8th- Before clicking on link, keep in mind that on Nov 12,2005, I returned to Austin in a wheel chair only able to walk short distances without a cane. After watching the video, you'll need to use your browser's back<- button to returned to this blog to read how and why miracles happened on 32nd street.

For those of you who might not know, St. David's Hospital where I received tremendous care and therapy is on 32nd Street in Austin. After days and weeks of work on drills to increase strength and coordinated control of my affected left leg, my therapist Jeanne and I began to focus on a progression of therapies to develop capacities specific to the running motion- applying (yet again) the axiom: instead of listening to the voice in me that says"I can't do that [e.g run]; asking "what are the steps I need to take before I can?". The snapshots above of November 22nd and December 8th depict a miraculous recovery no doubt- But the real miracle happened because I was fortunate enough to have access to a therapist[Jeanne] with an extraordinarily high level of training in neuro development training and a real gift for working with and managing an over-zealous, impulsive, and injury-prone patient.
Jeanne was kind [smart] enough to video tape my first attempt at jogging. See link below to play video and listen to Jeanne's comments. Note: The video of my "performance " on Nov22 was in circulation on the Murphy family network and as you might expect source of great joy and celebration......Not so fast or so simple for Jeanne or me: My feet were barely off the ground; my left arm flailing limply and out of synch with my right arm and leg! We were both excited and proud - but inspired to keep working towards the goal of running not shuffling.

This lead to a new round of carefully planned therapies and adjustments. Believe it or not the trick was mastering the skipping motion which took a few weeks and even that took some work on a drill that involved hopping rapidly from left foot forward, right foot back position to right foot forward left back while holding onto the back of a chair or resting hands on a waist-high platform (think standing version of the hokey- pokey). Improvement in arm motion was achieved with a simple, temporary adjustment: a little wrist weight and holding a baton in my affected left hand was enough to "engage" brain signal from brain to left arm to acquire sufficient control over my left arm.

Thanks to Jeanne's forethought to video a follow-up evaluation of my running motion on December 8th, you can see the miraculous progression between Nov 22nd and Dec 8th. Click on see video link below[Note: this will take you to youTube.com site after viewing video hit back button on your browser to return to brain under repair blog site]
Before clicking on link remember: on November 12th,2005 I returned to Austin in a wheel chair only able to walk short distances without a cane; and remember how, why, and that miracles happen on 32nd street.

see miracle on 32nd street video

if link fails, try copying and pasting URL below:
http://www.youtube.com/watch?v=ogBe3QWfp58

EPILOGUE:
Progressing from wheelchair to running so soon after my stroke was certainly miraculous. Reaching a point of physical recovery where I have been able to be able to jog through a 5K was hard work and a significant achievement; I'’m not yet at a point where running in or training for a competitive marathon would be possible. The same might be said of my cognitive recovery in terms of being ready to return to my career at the "competitive" level I was at prior to the stroke.

As those who see me on a daily basis know, I am enormously frustrated, disappointed and frightened over my residual physical and cognitive deficits. However, my recent experience participating as "honorary Stroke Survivor" in the Austin Heart walk presented a marvelous opportunity to apply my ability to run as far as I am currently able and to apply my available creative and verbal aptitude to execute a successful online fundraising campaign and to inspire hope and healing for others. These achievements provide provide me enormous appreciation for what I can accomplish and much needed energy and inspiration for pushing forward.

I am so grateful for the "“blessing" that my stroke happened outside areas that would have impaired my verbal abilities and that I am able to continue to work with a skillful speech/cognitive therapist to maximize what god-given cerebral capacities remain after a so significant an injury. Recall: a stroke is a Brain Attack. I am reminded of this many times every day. Please know that the process by which I compose and publish the entries on this blog are seldom easy, and that you are actively participating in my therapy and recovery when you visit my blog - So thanks for your time and attention to my recovery!