Goodbye Physical Therapy (17 Month Update)

December 18, 2011 by  
Filed under Our Recovery Journal

The holiday season is a time to put the best face on our family that we possibly can.  It is a time where we send out cards with our best family picture, discuss accomplishments over dinner and drinks, and otherwise celebrate a year well lived.  Our brain is wired to promote our lives and families just like a political candidate promotes competence and integrity.  As far as anyone else is concerned, our house is always clean and our kids always behaved.  We are generous and thoughtful in the way we distribute gifts and tip waitresses.  Whether we are talking to the people we want to be with or those we have to be with, our story is the same.  We present our life as one that has a constant upward trajectory.

Up until this past month, Jessica had been making positive progress with her recovery.  Her body and mind had hardened to the challenge much like a triathlete during training for the ironman.  Progress came in different forms each month, and every few weeks presented an opportunity to notice subtle improvements.  Some months her gains were documented by increased walking speed or greater dexterity on a fine motor task.  Other months the gains were not so easy to quantify.  How does one quantify comprehension, wit, or sense of humor?


Stroke-Affected Walking

A natural walking motion consists of striking the ground with the heel and using momentum and the muscles in the foot and ankle to lift up the heel and finish up the step.  After a stroke, muscle control on one side of the body is frequently impaired.  In the act of walking, a stroke victim’s foot is dropped and inverted.  The strike point is no longer the heel, for the foot hits the ground on its front outer edge.

Try walking across the room keeping your toe bent in and foot turned out.  Each step, keep the knee bent and heel up… strike the ground with the outer edge of the foot.  A short walk around the house results in leg discomfort and the unnatural feeling that comes with a sluggish gait.  To walk in this way, the brain must remain fully engaged throughout each step.  It must analyze and evaluate foot positioning throughout the movement.  Striking the ground with a bent knee acts as a kill switch for forward momentum.  A thirty foot walk from the couch into the dining room is now interrupted each time the stroke-affected foot hits the ground.  A stroll from one room to the next now transformed into a dozen or more individual walks.

Jessica has continued walking further and faster with each passing month.  Her pace on a track is just about one mile per hour and she has increased her walking endurance up to half an hour.  While our expectation is that she keep moving forward each month, constant progress cannot be achieved forever.  Jess has reached the point where pain management has become a limiting factor… the increased level of ambulation on the unnatural strike point an irresistible invitation for a large and painful foot callous.

In addition to the callous, Jess also dealt with the pain and inconvenience of a leg that has gotten tighter each day.  This tightness was a result of the timing of botox treatments.  The most recent injection was about three months ago, and the treatments last for about three months before wearing off.


When Therapy Goals are not Achieved…

In the insurance business, the left hand sometimes doesn’t know what the right hand is doing.  While physical therapy is one of the benefits of insurance coverage, continued therapy requires continued improvement.  In fact, insurance helps cover both the physical part and the medical part of her recovery.  The physical part is covered through PT and the medical part through botox treatments.  Although insurance understands that the patient needs both of these parts to continue progressing, the timing of botox treatments is not considered as a part of the formula that determines monthly therapy goals.

Continued advancement in physical therapy requires that a patient work harder and demonstrate physical progress each month.  Meeting goals requires that a patient have their best month every month.  The expectations are that the patient move faster and complete tasks for longer than their current best every month.  Medical changes and the psychological state of a patient are not a consideration when constructing the new goals.  Tightening up and pain management are simply not a part of the equation.  To make a long story short, Jessica did not make the necessary improvements to continue physical therapy.  At the end of one of her sessions, she was told that the last day of the monthly therapy calendar would be the final day that they could treat her.

Not only did Jessica fail to make her goals… she actually declined in the weeks leading up to her dismissal.  Instead of keeping her tempo up for her typical 15 minutes on the treadmill, the pain on her newly-acquired callous presented her with painful offers that she couldn’t refuse.  The pain presented at a much higher level than it had in previous months, and the only antidote was to take more breaks and stop pushing so hard.  The intensity of the physical pain led to emotional episodes and doubt.  It turned my nice, sweet wife into an ornery son of a gun.  Demands that she go walking and push through the pain during exercise now met with reluctance and animosity.  The army of excuses her brain manufactured became a formidable foe in our war against mediocrity.  The independent, rational, and mature Jessica that I married played the part of a malcontent who now obeyed the directives of a tiny callous on the bottom of her foot.

The physical decline continued even after therapy was stopped.  While I viewed the termination of therapy as a setback, she viewed it in a much more positive light.  In her mind, the discharge was a welcome event.  Her mind might now be freed from the apprehension she felt about working so hard and walking so far.  Unfortunately for me and her caretakers, we would now have to step up our efforts to fill the void left by the lack of therapy.  Jess’ own personal exercise schedule would have to be magnified to include the work that she had been doing during her therapy sessions.  If the setbacks could not be turned around immediately, she would continue to slide down the recovery mountain and possibly end up in a nursing home at the bottom.


A Scary Fall

In the months prior to this one, Jessica had strengthened and the risk of falling had become less and less.  The quad cane had been replaced by a duck foot model, and more recently by a single point cane.  Up until recent weeks, she could walk around the house without any concerns.  This most recent tightening, combined with the tiny footprint of her new single point cane, created a gradual deterioration in confidence in her independent walking ability.  She began to look weak and unstable during even the shortest treks around the house.

My fears were soon realized when Jess had her worst fall to date.  She had fallen a few times throughout the recovery, but on this occasion she lost her balance and sideswiped the brick fireplace mantle on the way down.  Bleeding and bruises are so much scarier and more depressing on someone frail and unstable.  The fall was tangible proof that the recovery was unraveling.

When things get really bad in life, the options available to fix them are equally unpleasant.  This chapter in her recovery came to a head the very next day that Jess was unproductive.  She cut her walk short due to pain, refused to attempt the grocery shopping, and complained that she wanted to remain on the couch rather than help with her normal chores.  The months and months of effort that had been put into changing her mindset from that of a patient to that of a mom being undone before our very eyes.


Time to Retreat and Regroup

What was needed was an intervention.  A horrible, soul crushing intervention that pointed out all she was about to lose… a confrontation that assaulted her sensibilities as a wife, mother, and even a human being.  She had allowed pain to be her master, and in doing so added stress and aggravation to her family’s life.  After overcoming organ failure and reinventing herself as a human being, the thought of losing a much healthier Jessica to mental fatigue and pain management was simply not acceptable.  Even one more step down this road a notion that could not be tolerated.

The storm of yelling, scolding, and crying contained plenty of drama and seemed to go on all night.  Eventually it passed and things seemed calmer… the world renewed.  Ambition was restored as expectations were reevaluated and adjusted.  In short, a patient who is acting like a patient is acting appropriately.  She needed to eliminate the parts of her life that she acted like a patient and everyone around her needed to stop treating her like one.


Adjusting Everyone’s Expectations

Not only did Jess need to change her attitude to act more like a mom, but so did we all.  She would now be expected to perform all the duties of a mom… and during the duties that were beyond her capability she would be expected to shadow whomever was helping her complete the more difficult daily endeavors.  Activities as simple as taking a plate to the sink, getting a drink, or counting out pills are just a few of those that she would now either do herself or shadow her caretaker.  The actions she would now be missing in therapy that caused so much pain would now be partially replaced by more regular trips to complete all of the “mom” tasks at home.  Pain could be managed better if an “extra” 30 minute walk could now be replaced by a myriad of trips around the house to shadow the person completing the work.

Throughout the recovery, we have tried to be positive and put Jessica’s accomplishments in the best possible light.  However, life contains much more nuance than can possibly be conveyed by putting ink to paper.  One reality is that she has consistently exceeded expectations and up until this past month has had a long string of positive months.  The much more basic daily reality we live in is that Jess still cannot do many of the tasks the rest of us take for granted.  She cannot drive, carry a glass or water, or put on her own leg brace or shoes.  She lives a dual life… one part consisting of extreme frustration from not being able to complete tasks that others would consider “simple.” The other part consisting of the pride and satisfaction of mothering children who have weathered this storm effectively.

Since the beginning of time, siblings have argued with one another.  There are times when our kids seem to have truly mastered of the art of bickering.  Verbal fights often break out over who gets to sit where or who gets to go first.  Although disputes are as common in our house as in any other, our kids have internalized the fact that their help is a necessity to keep the family going.  Every day they are called upon to help in ways that are far beyond what was expected before the trauma.  When their help is needed, they always answer the bell… sometimes going the extra mile and doing a better job than even their parents expected.

While we hope for improvement every month, it is unrealistic to think that we are on an indefinite upward journey.  Like many rollercoasters, there is a slow and controlled ascent that seems to take forever.  After that, the coaster crests and things really get exciting as the ride speeds up and encounters unexpected turns.  We hope and pray that Jessica has the physical stamina and mental resources to keep going each day.  Our ride was a great ascent in 2011 and we are prepared for more progress (but also more bumps in the road) in the year ahead.  We thank you for your prayers and your support in the past as well as throughout the upcoming new year.


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