Back to blogging?

As a form of cognitive therapy and pro-active oberservation of STROKE MONTH,

I'm returning to this forum to re-publish material developed some time ago.

Alas, I'm working with both old& new challenges: I started migrating files created in windows/powerpoint  to my now new MAC environment, and only now realize I've painted my self into cirner thusly files I edited in Keynote, cannot be opened by google docsS????

I exported  keynote to ppt format, THEN navigated to "Share" feature in google docs to get this file  Alas, multiple images and formatting work performed this morning were lost but I'll take this first step and revisit tomorrow:-) thanks for stopping by - as  no good deed goes unpunished- you might see invite to revisit a more portable, tolerable version:-)

A gateful goodbye

My tenure, my D.I.Y. experiment in Neuroplasticity at Convio ended on Friday,May4th.

I still struggle with SHORT-term memory, but I have so many reasons to record my gratitude for all that Convio has contributed to my quality of life- I’ll try to cover as much ground as quickly as I can so please excuse the  length or oversights. I’ll  share 2 pre stroke and 2 post stroke observations- instances that depict the core values of integrity, innovation and compassion that underlies Convio’s success and the success of  its employees and clients. 

Convio memories from before my stroke in fall of 2005:

1.       Greeting Pat Dillon at JSI FundRaising in Boston @2002?; Pat was pitching a partnership with Convio. Although the price point and complexity of deployment was beyond the reach of JSI’s 1,500 paradigm[ now SAGE 50 clients] I suggested  that  a few early adopters with budget for Convio might be found within the Millenium base of Higher – Ed clients. Pat listened and  responded with what I only now recognize  as a classic re- engineered vision plan;-)

My conversation with Pat was strikingly helpful compared to conversations with Kintera and even a pretty savvy guy named Jeff Patrick!  Pat Dillon’s professional conduct and observations on the shifting landscape of the industry’s adoption of on-line fundraising dissolved whatever doubts I (and others) held at the time that Convio was a bunch of smarty pants who wouldn’t listen to clients too narrow minded to perceive the grander vision Convio had to offer. I was not only sold; I was frustrated – because I realized THAT day that JSI had neither the capital nor talent to build what Convio already had engineered.  For those of us who hold mixed feelings re: the implications of the VC and IPO on the indecisively warm and fuzzy non-profit culture, let me assure you that the execution by Vinay and the team he assembled in the start-up  phase of Convio was enormously disruptive in a VERY  positive way- the incumbent players simply were too conservative to  execute what Vinay and his band brought to this  market- IMHO, the emergence of competitors merely confirms the validity of the Convio vision. (Ahem, I’ll make no comment on how one ought to interpret the significance of the $275,000,000 number we saw recentlyJ)

2.       My interview at Convio: Although I had phone conversations with Vinay, the in-person experience was mesmerizing and intimidating at the same time; then - as if from central casting- the subtle, erudite Dave Heart astounded me with answering questions re: the 360 data model and how that might map to the back office databases with which I was so familiar. By this point, I was mightily impressed: these two guys exceeded my expectations on the IQ and techy scale, but (I pondered) would the notoriously risk-averse market  “get” the course  Vinay and Dave had plotted ? The next two Convions Fred Waugh and Randy Potts provided answers with a healthy degree of skepticism and but a detailed command for addressing the challenges under which they were working .

Then came Gene- no nonsense and at an alarming pace right to the point:  “ Gosh John what a resume and domain knowledge…(ecetera, etcetera….) But DO you have start-up in your DNA?”  I admitted to some skepticism, but offered that I recalled the struggles I endured starting   a competitive athletics program at a Bohemian prep school- including having to repair an overflowing toilet in the “locker room” while a bus-load of kids was anxiously waiting for me. Gene admitted that I would be rolling up my sleeves and even getting dirty, but Gene  promised me I  would not  be cleaning toilets. This was not the only promise Gene extended  AND met! More on THAT aspect of integrity below. 

Now for examples of my experience at Convio after Stroke:

1.  Rushing to and through the 2007 Convio holiday party  Although I had made extraordinary progress  in both physical and cognitive realms- I still had great difficulty with filtering background noise – and so there I was sitting at home on the night of the Convio party. Gagan and Kelsie were calling hourly to cajole and then turned up at my doorstep to drive me to gala.  The noise and affection with which I was greeted was so overwhelming I could barely manage to maintain conversation or recall what I had just said or done – at some point into the formal awards segment of the evening Gagan pulled me up by the lapels to explain that Gene was presenting me with a Convio Star Award- to this day I have no clue what I said- except that I announced that I finally had a phrase to describe the panic attacks that then filled my days  “ Sheraz in a garage moments.”   
2. We’ve never done this before but we’ll make it work , and we promise: At some point soon after this night of celebration I recall conversation with Fred and Vinay about my concern that a two day battery of cognitive testing indicated progress but  all significant deficits persisted “and were likely to be the final outcome.”  In multiple conversations over the years, I was told that Gene was so impressed by my determination to grind my way through the rehabilitation process that he wanted me to know that as long as I was willing and able to accept a very limited and part-time role, as long as he was CEO there would be a place for me at Convio. Yet again, Gene made a promise; Gene delivered. Because he kept his word my quality of life has surpassed what any neurologist would ever dare to have suggested. I have no clue what my future holds now that My tenure, my D.I.Y. experiment in Neuroplasticity at Convio ended on Friday,May4th. What I DO know is that the integrity, innovation, and compassion  of the people at Convio have  provided all that I will need to live a very good LifeTrust me My Vita Est Dolce. While saying good bye is bittersweet, I have two promises: from this day forward my miraculous recovery story will always include a “Powered by Convio” imprint. AND-and I promise that I will continue to forge ahead with a level of effort that will continue to make you proud as that is the best way I can think to thank ALL of you.   

The Price of Attention Deficit

The circumstances of each individual and degree of recovery vary widely. There is one common pattern, however, that leaves many survivors of stroke or TBI with a persistent [chronic] speech or cognitive deficit. For the purposes of this post, I'll coin the term "Attention Deficit."

I selected a photo of me working in a pool to provide context for where and how the one hour sessions of speech therapy three days per week fit into my entire rehabilitation effort.

The physical rigors of therapies to re-acquire coordinated movement of my affected leg to walk more than 200 yards without a cane took months and were exhausting: Weeks of work on a treadmill suspended on a harness...THEN weeks performing sets of stepping drills in hospital hallways

The effort devoted to physical therapy was an uphill battle - due to the cumulative fatigue of day after day negotiating getting shaved, showered dressed,and fed with only one functional hand.

AND....
Each physical therapy session required a family member to transport me to and from my day at outpatient therapy.

AND....
My family spent endless hours with paperwork that shuffles between the service providers and insurance to assure I was getting the care I needed without exposing me or my family to financial ruin.


BACK to the setting of the pool.
Feel the burn. Smell the chlorine. Imagine all the frustration knowing that some anxious relative is pacing nearby....take a deep breath.

OK. Now sit down.
Shift your attention to speech therapy or "Brain exercise."
You are now reading a passage rich in details: names of people performing various tasks in possession of various objects. Now, try completing a grid that represents who was doing what with?

At some point, I began to make choices about priorities. My attention was overwhelmed by prospect of work on a host of deficits and no clue as to how I ought to prioritize ALL the work. One day, with NO dramatic "I quit" moment, I just didn't care if I couldn't finish some childish worksheet. I was exhausted from the time working on my shoulder in Occupational Therapy and already woried about working my fine motor control after dinner by practicing picking up coins with my limp, weak hand.


I guess that quiet surrender that day surfaced in the quality of my work with speech/cognitive therapist. Because I put cognitive therapy on a back burner, my therapist had no choice but to report that I ought to be discharged - as insurance often will not cover certain therapies once a patient is no longer demonstrating progress.

The moment when I "dropped my pencil" captures an inside view of the circumstances that leave many survivors of stroke or head trauma with chronic communication deficits...AND few options to re-qualify, afford, or access the care that might help.


For many survivors, attention and energy for work on "intangibles" like speech or cognitive issues falls to the bottom of a long list topped by work on issues like mobility or self-sufficiency with preparation of meals.

Advanced cerebral gymnastics -spotter required

After attaining satisfactory progress with duration and quality of attention, the next phase of activities involved"forced" use of increasingly more challenging thought processes: memory, sequencing and a subtle but exciting discovery - learning! I later came to see these specific set of skills referred to as Executive Functioning- capacity to break a problem or task into discrete steps and to assign sequence or priority to steps. At an even higher level, executive functioning involves the capacity to process feedback to recognize, understand, and correct mistakes - activities that engage a stroke survivor in this latter "learning opportunity" addresses a tendency seen in the behavior of individuals with injury to areas in the right hemisphere of the brain: impulsivity.

Description of activities
The activities at this advanced stage of cognitive therapy involved a sequence of computer- driven exercises in reading, memorizing then executing multi-step directions to move shapes to new locations in a specific sequence. The software feature that "forces" memory: the instruction disappear once you begin by moving the first object. The software feature that "forces" learning and error correction: the software highlights an object if moved to the wrong location or if moved in incorrect sequence -also, a "start over" option is available to recover the instructions and to get a second or third glance at the instructions to get the details and sequence straight. My therapist would review my performance results - provided by the software in terms of both time taken to successfully complete a set of exercises and the number of attempts to complete through trial,error, correction. Trust me, you wouldn't want to try this one alone - your sanity and the computer would both be at risk.

Why this works
As I learned from my experience with physical and occupational therapies (and from the explanations provided by some highly trained, superbly skilled therapists), the strategy of "forced use" essentially puts the body through a process that coerces or inspires the brain to recruit and train healthy brain cells to perform work previously executed by cells now damaged -- and in most instances permanently-- (due to loss of oxygen during the stroke). As described in a posting re: use of an electronic stimulation device to recover movement of my fingers:" The therapy helps you train the healthy parts of the brain following a stroke to take over the EMG signals that once came from the areas of the brain now affected by stroke. Repetitive use may help achieve voluntary muscle contractions of the paralyzed muscles by causing the brain to assign new brain cells to obtain direct muscle movement, assisted by the device."

So, the cognitive therapy works in a fashion similar to that of the physical therapy. My cognitive therapy included the additional wrinkle of the therapist's interventions that introduced adaptive strategies like taking notes or verbalizing instructions to augment impaired memory or developing a written check list as a proxy for intuitive executive functioning.

The most exciting revelation of progress attributable to the cognitive therapy came months later during neuro psych testing when I witnessed a cognitive equivalent to the promises of the physical therapy:"Repetitive use may help achieve voluntary muscle contractions of the paralyzed muscles by causing the brain to assign new brain cells to obtain direct muscle movement." There were several instances in which I intuitively applied one of the "practiced" adaptive strategies to perform either more quickly or more accurately on a task required by a test.

For example, one section of a recent round of neuropsych testing involved repeating a list of seemingly random list of items read by the tester:" Holland, moss, towel, ivy, Poland, broom, wheat, blanket,Thailand" etc. This type of memory test was administered almost weekly during therapy or evaluations with neurologist - but on this day, I remembered and intuitively applied an adaptive memory technique suggested to me in the context of viewing and recalling items in a picture. At some point in cognitive therapy, when presented a page with dozens of items and asked to write down the items I had seen, the trick, I was told by my therapist, was to recognize the categories of the items and to use that insight to remember in one instance the modes of transportation( plane, bus, car, bike, roller skates) and the animals(birds, lion,elephant) and so forth - So, on the second round of neuropsych testing, I had a front-row seat to witness my brain demonstrate the capacity to learn! The random list of items was comprised of plant, countries and household objects and with this insight easier to memorize and recall.

Cerebral gymnastics: part two

To the best of my recollection, (I'm not kidding I don't recall exactly but) the second round of activities in speech (cognitive) therapy addressed issues of the quality of the attention- the first round having worked on quantity i.e. duration of attention. The activities in round two all involved tasks that demanded "active" listening and reading for comprehension with testing of recall as the measurement /"forced use" aspect of the therapy's design.

In comparing the strategies and tactics of my physical and cognitive therapies I now see parallels in the sense that as the prescribed physical activities presented movements choreographed to "force" the use of my weakened affected side, the mental gymnastics prescribed for speech (cognitive) therapy presented tasks orchestrated to "force" the use of the affected areas of my brain --or the use of thought processes conventionally associated with the right hemisphere of the brain where CT-Scans and MRI's indicated cell damage from the loss of oxygen for the period of time when the normal flow of oxygenated blood through my middle cerebral artery (MCA) was interrupted by the stroke.

A sample of tasks involved included something as simple as listening or reading a passage then repeating a summary of the pertinent details. More challenging exercises involved reading a passage rich in details such as names of people performing various tasks or in possession of various objects and then completing a grid that represented who was doing what--with the trick being that the passage would not provide a"linear" or "complete" inventory of who was doing or was holding what-- so completing the grid required "active" comprehension in reading and re-reading the passage to gather pertinent data and to record "known" items on the grid -The final phase for completing the grid was , then, using what was known to induce or deduce by process of elimination other pieces of the puzzle.

paying for attention deficit

One of the first goals of my speech (cognitive) therapy was simple but critical: to increase the length and quality of attention. The trauma of hospitalization and attending sleep deficit presented significant challenges in sustaining focused attention. After a week or so, once my physical condition had improved to a point where I showed signs of being well-rested, I began working with a speech therapist to address the impairments from damage of a stroke that according to physical evidence depicted by CT-Scans and MRI's caused injury to areas on the right side of my brain. As, an introductory course in cognitive neuroscience or an attempt to hold a brief conversation with me even four days after my stroke would reveal -my injuries on the right hemisphere of the brain had little or no impact on my speech at least in terms of generating words;-) written or verbal expression if anything tended towards too much not too little. So the preliminary work focused on cognitive vs speech therapy of a verbalization nature. The first exercises were appropriately "mind-numbing" to the extent that the assigned tasked required me to control a racing, wandering mind to acquire a state of focus we all know or describe as "paying attention." Not something as simple as awake -vs asleep. but a state of mind that demonstrates an awarenes of and ability to intelligently respond to external stimuli. The first exercises which were I surmise both diagnostic as well as therapeutic involed listening to a recorded voice that read a list of letters and or numbers and pressing a buzzer each time I heard a specific letter or number. This would go on for what appeared to me for 5-10 minute strethches over the course of an hour or so with small breaks for changes of instruction to listen for the number 4 or the letter N. The challenge for me was
(partially) physical like trying to stay focus on driving while extremely tired. The other challenge was allocating sufficient band-width to rember what letter I was waiting for and to press the buzzer when the voice finally spoke the target letter or number. I couldn't help but to feel that I was in a battle of wits with the drone on the tape, who dilligently read his script of random letters and numbers with the dispassion of a mid-western boy-scout brought in to call bingo at a nursing home in vegas recently scandalized by cheating scheme involving a bingo caller on the take. So, my attention available to hear and to respond correctly was in competitio with idle thoughts such as imagining the face or the setting behind the voice on the tape . I did not receive immediate scores or feedback on my performance on these attention deficit tests but recall that my weekly report on goals for the upcoming week and performance against goals for previous week. contiued to note progress with the duration and quality of my attention