Time for a Change (18 Month Update)

January 12, 2012 by  
Filed under Our Recovery Journal

When one reaches a certain age, the daily routines and expectations of life become difficult to change.  We go through the same routines each day as we get ready for work, manage activities, prepare meals, and then eventually wind down for the evening.  Each small pleasure in our typical day elicits warm thoughts in our brain and a happy expression on our face.  The cozy confines of our life are comfortable… they make us feel like we’re living on our own terms.

It is a major shock to realize that a life lived inside our comfort zone may prevent us from the growth that we seek.  We want to move forward in life, but the difficulty of assessing habits and making changes in them prevents us from reaching our goals.  In the self-centered world of the 21st century, it is humbling to realize that the daily habits that we have spent years perfecting may actually be holding us back from the kind of life we desire.

As the page turns from 2011 to 2012, it is obvious that our family needs to make some changes for Jessica to keep progressing.  She has become quite comfortable with her current routine, but her physical recovery has advanced to the point that her daily schedule is in need of a makeover.


Changes in the making

In recent months, setbacks in physical therapy and the perception of a life stuck in neutral threatened Jess’ motivation.  My sweet, loving wife was forced to deal with increased pain and decreased hope for continued recovery.  Despite her best efforts to bottle up the frustration, it manifested as self-defeat during difficult activities.  Pain took over during therapy sessions and impatience with her limitations throughout her more difficult fine motor tasks.  The action of walking into the grocery store, cutting vegetables at the table, or making the trek upstairs to tuck in the kids… these tasks now seemed more like work than good living.

Major changes came in each of her three therapies.  First, physical therapy goals were not met and our three weekly hours of PT were discontinued.  Next, Jess’ frustration with her progress in speech caused her to request that this service be transferred.  Weeks of searching and several recommendations led to a new speech therapist in a new location.

Jess was reenergized to meet the new challenges in the speech therapy.  The thought occurred to her to explore new options in occupational therapy as well.  No patient really “wants” to be at therapy, and the constant repetition leads to a feeling of wasting time (even if that’s not exactly the case).  Doing the same activities in the same location day after day contributes to a stale feeling.  Therapy activities that brought a sense of satisfaction the first time they were completed now feel almost worthless on the hundredth try.

Jess has shown herself to be the type of patient who really benefits from a change in scenery.  Throughout the recovery, she has excelled at adapting to the new challenges that confronted her at each of her hospital and therapy placements.  Heightened expectations at each new site were met on a timetable that surprised and excited all who witnessed the progress.  The end of her most recent nine month therapy stint closed the door on her longest therapy placement to date.  She is now beginning anew with new therapists and a fresh set of expectations.  The reality of meeting new goals has helped her rededicate her attitude to doing her best every day.

Life continues onward and upward.  One year ago, our goals included “being able to pour her own drink, pick out her own clothes, and walk over to comfort the baby by herself.”  Each of these tasks is now within her capability and it is time to strive for more.


Less of a patient… more of a mom

Jessica spent much of her time in the role of “patient” during the past 18 months.  During the day, nurses have come to the house and helped her complete all her daily tasks.  She gets out of bed, manages her therapy schedule, assists in making meals, does some light shopping, and completes the housework is within her capability.  She has help with the tasks she cannot do, and is encouraged to do her best in tasks that she can help with (or complete independently).  In the evening, the kids and I encourage her to act less like a patient and more like a mom.  She has grown into her new tasks of laundry and dishes even though the job could be completed by someone else with much less effort.  During the past year, Jess has been encouraged to do more for herself… every few months she added new items to her list of expectations.  Each additional task completed made her feel like a contributing member of the family.

Even though Jess realized a great amount of progress up to this point, it is human nature to help her with tasks that seem to be near the limits of her capability.  While the ultimate goal is to perform all the duties of a mom, it is very difficult to stop short of lending a helping hand.  Seeing her struggle to butter her bread or look disappointed at how hard it is to lift the baby up to the couch is a difficult.  At times, she gets so frustrated with herself that someone is compelled to intervene.  Walking with one hand in a cane and the other tight against the chest, it made a lot of sense to exempt her from many of the chores that required carrying an item.  Readying the pills, bringing plates to the dining room, and answering the door were acts that she simply could not complete at a minimum basic level of competency.  Our focus for the past few months was simple:  Jessica would be expected to do all the activities that she could reasonably complete.

After a short time, the benefit of these tasks was evident.  Jess is now walking around the house more frequently.  She gets herself up without prodding to go to the bathroom or check on the kids.  Instead of asking the kids to come to her for bedtime hugs, Jessica now marches upstairs to supervise the brushing of teeth and join in the bedtime prayers.  Her efforts have been rewarded as the kids have begun to walk right past dad and seek her out for advice and comfort.  This above all allows her to feel more like a mom… more like herself.


Reassessing our entire program

The end of the past year brought the realization that it was time to make some major medical changes.  Stroke affected muscles are notorious for being tight.  There is even a word, spasticity, that describes the constantly intense muscle tightness that results from a stroke.  For the past year, regularly scheduled Botox treatments have been a major ally in fighting spasticity.  These treatments relaxed her leg muscles enough that she could work out on a track or treadmill.  While these treatments have been effective in helping her pursue the goal of walking faster and further, their benefit has diminished as her workload increased from 2 minute strolls up to walks of 30 minutes or more.

One lingering effect of a stroke is that the muscles automatically tighten up when the body exerts effort.  An action as simple as a sneeze forces Jess’ right arm to be pulled into her chest and the right hand clenched tight.  Long lasting exertion such as working the arm bike or walking the track results in the same kind of tightening.  Botox has helped her achieve greater endurance, but this most recent injection has brought little additional benefit.  We have concluded that botox treatments are no longer the go-to treatment in her continuing recovery plan.  Its purpose is to loosen her up to allow her to do more, and now her body has strengthened to the point that loosening up just isn’t enough to allow for continued improvement.  The days of injections enabling her to walk further and move faster have come to an end.  She is now ready for more invasive but long-lasting treatment.

The most effective treatment going forward appears to be surgery.  Although Jess wears a foot and ankle brace to walk, the tightness of her muscles cause her right foot to constantly push down against the brace.  Instead of landing on her heel, Jess’ foot is so tight and inverted that she strikes the ground with the front outer edge of the foot.  This results in significant pressure on this area, a good sized callous, and a pain intense enough to command her to cut her workout short.

Surgery will basically lengthen the Achilles tendon and allow her foot to return to a more natural position.  This will help her toes remain high enough that she can strike the ground with her heel.  By correcting her strike point, we hope to eliminate much of her foot pain and allow her entire walking motion to remake itself in the image of efficiency.  She will still need the brace to keep the foot in place, but the science behind the operation is that a lengthened Achilles will allow for the more normal walking motion that we seek.  After the current Botox injection has run its course, Jess will undergo a battery of tests and much observation in order to determine exactly how to perform the surgery in order to maximize her benefit.

The pain and frustration with walking is just one of the recent challenges that have sprung up in Jessica’s recovery story.  Her communication skills have improved to the point where her verbal communication has returned to normal.  Her effort is now focused on learning to read and write.  Phonics and word sounds are a much bigger task now than when she learned them the first time.  Speech therapy remains her biggest source of frustration.  When someone is as smart as Jessica, living without a mastery of literacy makes her feel inadequate… embarrassed that her mind can’t work as efficiently as she is accustomed.


Moving forward into a new year

The best thing about the recovery are reflections of how far we have come and dreams of what life will be like in the future.  After a year and a half, Jessica has finally had the revelation that she has been waiting for… the ah-ha moment where she has realized that she will read again.  Her mind is beginning to connect the dots in a way that it had not been able to do before.  The increased time spent on flashcards and activities has emboldened her to put away her pride and really try her hardest.  Although she doesn’t want friends or family to see her struggle, the months of encouragement have made an impact.  The armor of doubt that has protected her from her fears of failure is something that she is now able to be taken off and cast aside during her speech sessions.

After a year filled with winning months, the difficulties of the past few weeks have opened our eyes to some changes that needed to be made.  A new year with new therapists, expectations, and hope with the coming surgery all invigorate Jess.  The changes provide our entire family hope that she will do more than ever before.  Instead of encouraging activity only in instances where it would be sensible; Jess will take it to the next level and participate as if she were perfectly healthy.  She will help out with all the tasks that she thinks she can complete.  More importantly, she will challenge herself to complete tasks that that she isn’t sure about.  Her presence in the house will be increased to an even greater level as she becomes a shadow behind every action taken.  Every book that discusses major recovery insists that the path toward the best possible life contains day after day of exceeding one’s own personal expectations.  In a nutshell, our plan for 2012 is doing a little more than we think possible at every opportunity.

The past year was one where our eyes have been opened to the realities of the present and the possibilities of the future.  The next step is crossing the threshold of our comfort zone into a new world that consists a daily routine that is new and different.  Although it will be hard to change some of the most cherished aspects of our current life, the investment in Jessica has been (and will continue to be) worth it.


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