bright moments in early december 2005

skipping - possibility of jogging, finally able to bear weight on left arm, it's safe for me to be alone for more than 5 hours without adult supervision
Thought you would all appreciate a quick update on recent progress I’m making down here in Austin you've all been so considerate during my down times that i want to be sure that I share the brighter moments as they present themselves.
Received all positive feedback at conference with therapists: They expect to have me "jogging for five minutes within a month! Yesterday, I was even able to skip: a more complex motion than you might imagine if you're just getting back to walking! i was thrilled with my progress with this task as a couldn't coordinate the skipping movement a week ago even on a single foot a good sign that I can manage the shifting of weight and the quick foot movement involved in the skipping motion which has a step, hop, pause step, hop, sequence. most of the exercises they give me are designed to retrain the brain to communicate with the muscles, so the therapy is not simply a matter of building muscle strength instead it is a coercive technique that requires the brain to create or rediscover neural pathways to manage a forced movement along the lines of: "necessity is the mother of invention." The approach requires some risk taking and acceptance of minor failures in the form of incomplete movement on tasks and patience to keep trying until the body corrects itself and re-learns the right way to execute the required task. [look for link to description of the clever mind/body games therapist have designed to "force" use of affected muscles and other tissues]
Oh, by the way, this "forced use"approach can work miracles:http://brain-under-repair.blogspot.com/2006/08/miracle-on-32nd-street-late-november.html

I also received clearance to be on my own for 4-5 hours at a time at home, so long as i don't engage in risky activities such as exercises where my balance is extremely challenged and requires someone to "spot me." I still need minimal adult supervision outside the home, so i can't just wander out to the coffee shop on my own as I have frequent want to do.. driving is out of the question for a while but they have driver's training and testing program to get me back to driving safely and we'll work on that next month. other good news is that i am successfully bearing all my weight on my left arm.. a prerequisite to regain use of my left hand a deficit that is very frustrating - please excuse misspelling and typos as i am stuck with typing with my right hand only for now. But, I am starting to see some movement in my thumb and fingers. I can grab but(oddly) can't extend the fingers up and out. So i can pick-up and hold, but can't easily release an object. Any progress with the left arm is a promising sign of muscle strength and reacquisition on the neural pathway between the brain and the handand fingers. So, getting to a point where i can support my weight with my left arm is a significant milepost. We operate an amazing machine! This body is much more complex than i realized. And like most of us, I never bothered read the owner's manual;-)

re-wiring the brain with bio feedback - even a two year old can do this!

Once we've confirmed that signal is getting from brain to fingers, the trick is re-learning "controlled" and "coordinated" movement. Bio-feedback training uses graphical projection to show amount of signal (measured in mega volts) brain is sending different muscles as I execute hand movements such as making a fist or signaling a stop sign. You'd be surprised how these seemingly simple operations involved "learned" movements that are stored in the "pre-motor" section of the brain.. Alas mine was fried by the stroke so I'm going to have to re-learn and store coordinated movements like tying my shoes, buttoning buttons, rolling up my sleeves etc. The experience is something like using remote control with only "go" and stop" buttons and having to learn how to steer and just how much juice to give the "go" button. Oh yeah and then there's the wrinkle of flexion(contraction) and extension (relaxing)."Go"= flexion ,for most part, which with the fingers means closed- extending the fingers uses a different set of muscles so you have to send a "go" signal to muscles along the forearm and base of the palm to make a stop signal with your hand- sending the "go" signal to fingers themselves results in flexing the fingers like a fist to give someone knucks or a punch. At first thought, the stop sign looks like a finger movement doesn't it? Well, not so fast...The bio feedback on the screen in this instance shows signal received from brain to muscles along my forearm vs signal received by muscles on the top or back of my hand. Pretty simple even a two year old can do this- that's the time to learn all this crap!

feb2006 "Little victories": walking on my own to coffee shop, riding bike to physical therapy, picking up pennies

It’s been a few weeks since I last circulated an update so thought I would send out a summary of recent ”Little victories,” as I like to call them, to let those of you who have been so generous with compassion, prayers, positive vibes,email and notes over the past month know that I am doing well and working hard to fulfill your wishes on my behalf. Word from St. David's is that physical therapy goals are being met in terms of regaining ‘normal gait.” I’m doing well enough that I am now (finally! )cleared to walk on my own to my beloved neighborhood café jo’s where I am seen at 7:15 each morning and at the best sidewalk table on any given sunny afternoon of which there have been several since Christmas weekend. I am no longer using a cane so that has joined the heap that includes the wheel chair, and the arm sling. Fortunately, my primary physical therapist “gets” me – she was varsity volley ball player at Boston College so has some appreciation for and sensitivity about my goals and expectations regarding returning to what I would consider “normal” physical activity physical activity without taking risks to my health we are exploring the limits to duration and intensity of cardio vascular activity – monitoring my blood pressure before during and after any session on stationary bike, treadmill or water jogging in the pool I’m at the point where I can do 15 minutes at a moderate pace and keep bp under 160/90 in fact today posted a 146/82 after 12 minutes on the stationary bike, so next week we try 20 and we’ll keep going as long as heart rate and blood pressure remain within safe level. Ultimately need an MRI and neurocardio team to assess health of ceratoid artery where occlusion and clot are believed to have formed to cause stroke. I’m thrilled to report significant progress with the left arm and hand: I’ve regained gained flexion (ability to make fist )and extension Note: this is the typical progression for recovery of motor control. I’ve learned that you’ve gotta have both flexion and extension to use your hand to pick up (and this part is key ) let go of objects. Challenge has been gaining control of fingers. Believe it or not, movement is easier or harder from different arm positions: arm extended, arm in weight –bearing position, close to body away from body all present different challenges, other challenge is gaining isolated control: i.e. lift the index finger only bring the middle finger down and the thumb across the palm-try picking a penny up with you left thumb and ring finger and you’ll see what I mean and exactly what I have been doing again and again, note: it’s easier on a towel or table cloth than on a hard surface of table- practicing these fine motor skills has given me more strength and control with the left hand – I’m a long way from fully functional – which can be very frustrating as I’m working so hard and seeing progress yet not able to use the damn hand the way I’d like to be able to! Just a matter of time and god knows it’s great news that I have attained full flexion and extension. My grip strength has been measured and shows great improvement which means brain signal is getting to each of the fingers and the required range of motion has been seen now it just a matter of developing better control and re-training the hands to work the way they used to. Here's how I'm re-learning I have learned to tie laces but it takes quite a bit of time and concentration. I need to be reminded to breathe when I get in that mode of concentration. I’m often huffing and puffing over a pile of change at the dinner table practicing various finger and thumb combinations picking up coins I'm doing pretty well all things considered... Current challenges are getting my left hand back to full function which means hours of monotonous finger and hand exercises - I’m doing exceptionally well as far as the left leg is concerned in terms of strength and balance as I am now cleared to ride a bike on my own!Click on following link to read about the derivation and significance of the term Little Victories


I even rode today to therapy... about a five mile ride through downtown! So the real challenge now is being careful not to do too much (I am exhausted by 4pm most days from physical and mental effort it takes to get through the day.. Other major issue is emotionally accepting that while I am making great progress in some areas I still have a long way to go and that it will take patience and acceptance of the reality that I had a stroke that caused serious injury to my brain only 12 weeks ago. I'm so eager to gain independence and full functionality in so many areas it's hard to "give in" to fatigue or the realization that I'm just not ready for certain tasks

august 2006- the good, the bad, the ugly

The good, the bad and the ugly – best title for latest update re: my recovery and I’ll ad the subheading of the words of the immortal Hunter S. Thompson “It still hasn’t gotten weird enough for me yet…”
The good: My physical and cognitive progress has continued to a point where I am well enough to be driving myself in to work at Convio Tuesdays and Thursdays, running up to 3miles a couple of days a week – and even well enough to fly to New York to attend an industry trade show [CASE conference] where I represented the firm at a booth in the exhibit hall. Was well enough (or so I thought) to extend the trip for some rest and relaxation in Cambridge and Rhode Island.
The bad: on the ride back from Horseneck beach (about an hour south of boston ) to sister sheila’s house in Rhode Island. I fell ill. Thinking I was simply tired or had gotten too much sun at the beach and just needed a nap, I fell asleep in the back seat of van being driven by my mom. Only a few miles from my sister’s home in Bristol, mom noticed that my arms and legs appeared to be flailing. When she pulled to the side of the road and got a closer look, she (correctly) deduced that I was in the midst of a seizure. Nephew Jimmy who was on the ride, called ambulance and I was transported to emergency room at Rhode Island hospital. Examination and review of history including recent stroke by team of neurologist confirmed suspicion that I had experienced a seizure. Many theories were offered as to cause and prognosis, but consensus is the seizure is part of the “normal” course of recovery process from stroke – though recent factors of stress of return to work , travel, disruption to sleep, diet and a few missed doses of my many medications obviously pushed me over an edge that made a possibility an inevitability. In laymen’s terms –seizure during stroke recovery is common because some cells within the areas where damage from stroke occurred are still functional and as motor and cognitive recovery progresses the increased activity in these damaged areas creates electro-chemical activity that runs afoul as it hits the wall of scar tissue along previously functional pathways. These irregular, dysfunctional charges ignite adjacent “kindling” [other irregular neuro chemical activity] creating a circuit overload that results in a seizure essentially a brain cramp in which brain is generating more current than it can channel – aside from the obvious physical risks of falling or biting one’s tongue during seizure is the potential damage to cells in areas in which the seizure originates potential damage will vary depending upon intensity and duration of episode. Prognosis and treatment? Well I’m on my second phase of medications to reduce risk of a repeat seizure: started with dilantin now on keppra a less invasive ant-seizure med and the hope is that this will prevent another episode and that brain will resolve the issue by developing healthy, functional pathways for increased neuro chemical activity that accompanies increased motor and cognitive functions. Tricky phase will be weaning me off the ant-seizure meds and don’t yet know the timing and decision points for that section of the course. The motive for getting off the anti-seizure meds is that the side effects: fatigue, diminished attention and processing speed- because they work by chemically suppressing brain’s neuro- transmitting process. For those of you who’ve been following my medications closely, you may recall that I am also taking drug called baclofen that operates in similar fashion to treat muscle cramping by chemically inhibiting spinal receptors from processing errant/excess signals from brain. So the seizure was somewhat foreshadowed by issue I’ve been having with abnormal brain signal from right side of brain resulting in too much “tone” in muscles on my left side. Are you all getting this? I’m sorry for the length and complexity of the details, but I know that many of you are worried and so want to provide information as best I can to help you understand how and why I will continue to heal ok?
Ok..and now for the ugly. In the midst of all this medical drama at the insistence of my disability insurance carrier, I was “coaxed” with thinly veiled threats of possible ineligibility or disqualification from the disability benefits I am receiving through my employer’s private disability insurance policy -which pays me a reasonable % of my former salary if a medical episode prevents me from fulfilling obligations of my job and or performing at the level of ability I enjoyed prior to injury – great coverage if you can get it but gets pretty testy… as they’re now on the hook for serious$$ if I don’t recover fully- so their interest in having me apply for SSA disability is based on an absurd and grossly self-interested hope that I might qualify for SSA disability benefit- so that they can reduce the amount they pay me by whatever amount I might be able to draw from social security. Here’s where and how it goes from weird to possibly really ugly: after numerous calls to follow up on the status of my application to social security, I received notification that a medical board had reviewed my application and made the determination that the extent my injuries constituted enough disability to be eligible for social security disability benefits – in spite of the fact that I have been discharged from two rehabilitation programs based on extent of progress and recovery and that I was able to exercise vigorously every day, drive and have returned to work two days a week. So off I go for an appointment with a disability benefits representative to discuss distribution of the benefit to which I am now amazingly enough entitled. On the eve of the meeting with the feds, I thought I ought to make absolutely certain that I was not committing fraud by not disclosing to SSA that since submitting my application I had returned to part time work and was now earning some pay from my previous employer. Of course, to cover all my bases I also faxed a letter to my insurance carrier informing them of finding by SSA that I was entitled to benefit and my concern that I was under the circumstances obliged to disclose to SSA tat I was now earning pay through part –time work asking that they notify me ASAP if they did NOT want me to disclose this detail to the federal agency with whom I was meeting to discuss process of collecting benefit to which they had found me entitled. Must admit I did derive some degree of satisfaction forcing these weasels to communicate back to me that yes, they did not want me to commit fraud and by all means should disclose my employment status when meeting with representative at SSA. Just when I thought I had seen it all… the only process that could be more complex than applying for disability through social security is process of refusing to collect benefit to which you have unwittingly become entitled…As explained to me by a genuinely bewildered and sympathetic representative of SSA: the gist of my situation is that, by law, the SSA must dispurse to me the benefit to which I have been found eligible within 15 days but that the following events were most likey to ensue: based on the amount I have earned since june 15th at Convio, some of the benefit I will receive from SSA I will have to pay back to SSA and that my good friends at my insurance company will immediately start to reduce the monthly payments they send me significantly – to recover the portion of what they t paid me while I was actually entitled to a SSA benefit. Recall that my doctors have continually warned me about keeping my workload and stress levels within reasonable levels. This might actually be genuinely fun and funny were it not for the significant negative impact this might all have on my health, finances and attempts to restore my career – all because an insurance company has a policy and a process designed to manipulate my situation for the possibility of reducing their short-term financial liability by a meager amount of about $1,500/month regardless of the risk and disruption this process might have upon my welfare – that my friends is UGLY- what scares me now is that I’m now dealing with the unpredictable behavior of this insurance company that might act like a cornered, wounded animal- I’m visualizing a weasel with sharp teeth and claws with whom I’m competing for wedges of cheese on a monthly basis.I’ll try to keep my sense of humor – helps for me to share this with you all so please laugh with me and thanks for all you friendship, love and support through the good, the bad and the ugly,
Love,
johnnie

ides of march update

For those who haven’t seen me lately I’m pleased and proud to report that i've been working my ass off. can't wait to see you all and to show you all my new tricks! AS you may have read in previous update:i can skip! you know most men can't and that most men/people should...when i was discharged from st. david's my therapist gave list of exercise to do, and .on the list was "skip 2x" when asked was told to skip 30-50 yards twice daily. my reaction? “i think the world would be a better place if everyone skipped twice a day.” so, I've taken this campaign to the streets of Austin and regularly approach unsuspecting type “A” personae with the opening line "excuse me, have you skipped lately?" invariably I receive a quizzical, annoyed look which I address with an enthusiastic demonstration of my skipping form followed by explanation that I was recently flat on my ass in hospital bed a few months recovering from stroke and paralysis but that I'm skipping now -"so, what's YOUR EXCUSE? You'd be surprised at the conversion rate from annoyed, hapless victim of a random verbal assault to intrepid skipper. Anthropological observation: if victim is with a group there’s invariably a chorus of head nodding and" he/she needs to skip!" so peer pressure may be factor in conversion rate. For those of you in Austin. you would be thrilled but not surprised to hear that toni price skipped with me from the stage to the bar(of course) and back last Tueday night. This episode was witnessed by a hippie embroiderer named happy Jack who had sewn the word LEFT into the torn left armpit of my shirt in November of 2004(he was offering his trade at a fundraiser at a local coffee shop)at that time I somehow thought that since I was moving down to Austin from Cambridge, and that the shirt was blue and that the tear was on the left armpit that” LEFT would be appropriate…well on the night of the skipping with toni price, hippe jack somehow recalled that I was the guy with the liberal blue shirt he had worked on over a year ago…well one thing lead to another, and I was back to his table a few days later to repair new tear in the shirt same armpit..he told me his work was guaranteed and to stop by. When asked what I wanted embroidered, I reflected on how hard I’ve been working to regain use of my left arm and hand so naturally suggested”GO LEFT” this was received quite enthusiastically by happy jack an surrounding band of hippies who immediately raised their mid-aftenoon lonestars with toasts of “go left!” and “the left’s gonna rise again!” jack’s explanation of my stroke recovery only served to fan the flames and lead to a chaotic round of skipping and “go left” chanting.. quite a scene. Little did I know that I was igniting or rekindling a movement here in south Austin!

As for medical news: had been struggling with pain and cramping in left leg- which was running me down by waking me most nights. Got to the point that therapists were convinced that an epidural shot of steroid into injured disk was only course of treatment. This caught the attention of my neurologist, who (fortunately) intervened. After examination, he came to conclusion that cramping was sign of hyper tonicity(too much tone on left side) which is fairly common phase of stroke recovery - essentially brain signal out of whack causing muscles to be in constant state of flexion which can result in cramping and/or fatigue and in case of my left hamstring perhaps irritation of the sciatic nerve – he has prescribed drug called Baclofen usually used to relieve spasticity in ms patients. I going through period of adjustment of dosage level but see some improvement: now that I’m not so concerned about my back and herniated disc, I’ve returned to more rigorous exercise: have been biking to pool at st. david’s hospital for aqua therapy which includes water jogging (jogging in deep water wearing flotation device and doing some running on treadmill(they have an underwater treadmill! So I’m getting 40-45 minutes of jogging with som “impact jogging as well! Facility also has equipment that allows me to work on left arm which is critical to recovering use of my left hand.. they have underwater parallel bars on which I can do vertical pushups and various ab exercises – I’m trying to retain that “girlish figure” I acquired from marathon training followed by month hospital stay;-) the also have barbells with fins instead of weights which allow me to do arm exercises using water’s resistance instead of weight. With tricia’s april 1wedding and possibility that I might return to work in a few months lot’s more to report………
.but just wanted you all to know that your prayers and thoughtful words of encouragement have kept me moving along the road to recovery thanks again for your friendship and support,love,

Johnnie , uncle johnnie or murph as appropriate and
GO LEFT! AND
PLEASE SKIP AT LEAST ONCE A DAY FOR ME WOULD YOU?

how I explained what happened in a january email

Greetings to all from murph in Austin. Not sure if word through friends or plough and stars alumni association has brought you "breaking" news about my recent “performance" past October during the 2005 Chicago marathon, so I thought I might send an email to bring folks up to date with what happened and how I'm dealing with it feel free to forward or excerpt- murph I have a bit of news but i 'm afraid it's not all good: I left on October 6th(2005) for Chicago to run the Chicago marathon and had an unexpectedly long stay...marathon went "well"- that is I completed in 3:06 which is reasonably good time considering what i am about to share with you. At mile 23, I began seeing spots and dots in my right eye. Assuming it was dehydration, I stopped to stretch and take more fluids at a water stop, then continued on for mile 24 in quick pace (5:41 mile pace to be exact). So, when i crossed the finish line in 3:06, I was pleased enough with the result. And though I had vision problems with my right eye, did not think much was seriously awry "just the usual fatigue/dehydration" I thought.. I felt fine an hour later, at least well enough to see properly and to go out with my brother (who lives in chicago) and sister (austin sister patricia who ran marathon that day as well). We ended up at a fun place called Southport lanes yes, a bar with bowling lanes. So, I was feeling well enough to toss a few frames of bowling until my hamstring started cramping- it had been bugging me during and after the marathon. Hoping that stretching my legs would relieve the cramping, I laid down on the floor to stretch my legs, when a waiter came over to help me up he, and soon then, I realized that I was not at all well: my arm was dead and I had troubling standing. Next thing you know, ambulance blah blah, emergency room blah blah and I wake up later that night in the intensive care unit of Loyola hospital. Turns out the issue with vision at mile 23 was first sign of a stroke. Apparently, a blood clot formed in my neck during or after the race and then went to the brain or was blocking flow of blood to right side of my brain - your basic stroke. Spent the night in the emergency room where matters only went from bad to worse. Notes my dad took during phone call at 1pm the afternoon after the marathon with neurologist at Illinois Massonic after being admitted from the emergency room paint a vivid picture of extent of damage and reason for the end result: total left side paralysis-"doctor reported massive stroke(on right side of brain will effect left side of body)...critical condition .. bleak progress... put on ventilator. Further conversation about possibility of transfer to loyola, told doctor we approved although warned about risk of transfer. Was eventually transferred safely by ambulence to Loyola Hospital. Spent four days in ICU at Loyola before i was stable enough to be transferred to the Rehabilitation Institute of Chicago – a place that specializes in stroke rehabilitation: Sorry to drop this on youin an email, but the good news is that I’m back to my home in Austin and i'm talking and walking up a storm. I was in- patient at the RIC doing rigorous physical therapy in chicago from oct 12 til nov 14th and walked out on my own power! I'm doing physical therapy four days/week here in Austin at St. David's hospital as an outpatient. My legs have recovered quite well to the point where I have jogged on a treadmill and can walk without assistance of a cane. Remaining deficit is that my left arm and hand are not completely functional. I have regained flexion in the hand which means i can make a fist and pick some objects up, extension of the fingers has been slow to come, but time will heal that- so that's my drama these days. My sisters have been tremendously helpful and supportive throughout this entire episode. I'm luckier than I realized on that count, and so many friends have come out of the woodwork that I never knew cared so much! Sure, I’ve had some frightening moments and dark days, but the overwhelming lesson for me has been the realization that I was/am blessed with great friends and family and as with the”little things” like being able to tie my shoes or button a shirt there were many things I took for granted! I've leaned quit a bit about myself and others in the past month. So, sincerely I wish you a "happy new year” we all have much to celebrate. I've come to realize that I had a great life, blessed with good friends, a good job, a great family- so I am especially motivated to work hard to return to what was a rich life and if that takes four days of physical therapy per week I’m game for it. A bit of a heavy email from me.. sorry bout that but I do hope you are all well and happy where you are. Hope some of you might email back, as I’d love to be back in touch. I promise to keep working hard, so that all the news you hear from me will be good from now on. my current goals are to get back to work (should happen by may, i really want to get cleared to ride a bike - bit of a challenge cause I'm on anti-coagulants so bleeding is bad... running again is not out of the question, just a matter of time before my vascular health has been cleared so i can get off of blood-thinning meds.
love and best wishes for a happy and healthy new year,
murphp .s sorry about the mispellings and typos: i'm operating with only one hand these days