Therapy Team 4

Our greatest gift in this entire process was meeting Martha, an Occupational Therapist, or OT. There are truly angels among us, and Martha exemplifies them them in all ways. Her charm and caring attitude was infectious, as was her friendship. 

Martha worked extensively with John in the SNF. She worked on balance and training normal movement in his right arm. Every normal movement sent electrical messages to his brain about what his arm should be doing. 

John wore special splints at night that Martha hand-built for him. These splints kept his arm in a normal position while he slept. 

Martha worked on weight bearing exercises extensively. This means she put his right hand down beside him, kept his arm straight and had him lean on the arm. He had to put “weight” on that arm. That weight helps the muscles remain functional and helps prevent “tone”. This is not the same "tone" that musicians know: “tone” to an OT is the stiffness that occurs when muscles no longer get used. The muscles eventually lose their ability to move because of the tone and then the arm becomes frozen. She also did a lot of “range of motion” exercises with him. This involved keeping the joints of his arm and hand moving with the normal movement. The reason for this was to keep the joint from freezing.

Unfortunately, the damage to John's brain was so severe that he has not regained normal movement in his arm. It was not that the therapy was unsuccessful, it was that John decided not to follow through with the work and exercises that Martha taught him. John made his own decision on this.

What we both learned from Martha was an attitude of joy. No matter what the final outcome of the occupational therapy, the outcome of the psychological therapy of being in her presence guided us in the direction of the spiritual healing that was and is far more important.

Martha is an NDT, or Neurological Development Technique Certified Therapist. She also gave us referrals for other NDT Physical Therapists and excellent Speech Therapists. She has her own private practice but maintains her connections with other therapists through professional associations. I strongly recommend that you seek out NDT Specialists. Those therapists are not even allowed to study the NDT training path until they have had years of therapy experience.

Martha's radiance still sparkles in our life. The gratitude we both feel for having experienced her cannot be measured. Although John no longer gets therapy from her, we still see her on a social basis regularly.

 2014 Nancy Weckwerth

Therapy Team 3

There was one fear regarding therapy still nagging at me, pinching me in the middle of the night and keeping me from sleeping. It kept creeping around the house like a dark spectre: it lurked in corners. 

This fear resulted from the fact that I knew John’s personality so very well. I knew that John had always been a person who thrived on instant gratification about anything that did not involve music. With the music skills of performing or composing, John was more focused than any human I knew. With everything else, like a typical artistic personality, John was truly uninterested. He lived for music only. All other aspects of life either resolved themselves instantly or he allowed them to slip aside and he simply refused to participate. His beautiful musical personality had its own catch-22: he knew the benefits of practice and work, but since therapy was outside his work ethic with his music, I feared he would lose interest.

As we embarked on the therapy train, starting slowly and gradually building skills, I knew that once John’s brain healed more, his true personality would return. Initially, his personality was shrouded in the haze of severe aphasia. With trepidation, I felt that as he healed and the shroud slipped away, he would lose interest in working on therapy. This was the dark spectre of fear that lived in me. I knew that the window of time we had to make great progress before his attitude shift occurred was precious.

This fear motivated me to become Super Caregiver. I wanted to polish that window of time until it sparkled. My dogged insistence on all-the-therapy-we-could-squeeze-into-every-minute-of-every-day became fanatical. There was not a moment to waste.

Then one day, at about two and a half years into the intense PT and OT, my fear became reality. John informed me he truly believed that he would wake up one morning and he would be able to walk again, and his right arm would function normally. He thought he did not have to “do” anything to make this happen. He came up with this concept on his own. It became his excuse to sit down and wait for his magical healing to occur.

This was particularly apparent at one of his early morning PT sessions. He would spend an hour with his therapist using a normal walking gait that he had learned with this therapist. He actually had the ability to walk completely normally. As soon as the therapist said "our time is up for the day", John reverted back to the dragging gait that he had learned from the poor quality of therapy in the SNF. He did this because it felt "normal" - because he had learned this first. I was horrified! He was refusing to apply what he learned in therapy to his normal activities.

We had run up against the wall of no return regarding his cooperation with the therapy. My fear became reality.

From this point forward, I knew I would have to drag him to the therapy sessions so I made a hard decision. I decided to stop paying for physical therapy three times a week. I stopped scheduling that 7:15 a.m. appointment thirty miles away. I stopped being the chauffeur for that event. My time and the money was best spent in other directions.

I was heartbroken.

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Therapy Team 2

I learned that stroke survivors are challenged on so many levels. The condition called Aphasia[1], the term for the results of brain damage, is an incredibly cruel master of the body and psyche of its victims. Because of the brain damage, their challenge is monumental. For example, in cases like John’s where the stroke is massive, it is extremely difficult for them to motivate themselves to do therapy of any kind. 

The loss of language from aphasia causes the patient to be unable to put together concepts, make decisions, or anything related to internal or external communication. Internal communication refers to the brain’s inability to communicate within itself in addition to an inability to think clearly. External communication refers to the inability to communicate what thoughts exist to anyone else. 

John lost his ability to rationally look at issues and make decisions. He was merely an observer in the process of life. Initially, he was not able to understand the concept of therapy relative to its potential for him.

In our case, for the first three weeks after the stroke, John was malleable and just did what his speech, occupational and physical therapists told him to do. He didn’t have much choice. He was a captive in a rehab unit. His time was managed by the system. His daily schedule was mapped out for him. His choices came later, when his brain began healing.

After about a month, there was enough healing in his brain to start to clear away some of the aphasia shroud. 

Here’s where I as Caregiver essentially held that life line out to John. I got to encourage him to pick up that life line. Since I knew the value, I insisted that John and I continue as a team, as we had for so many years in the music business. This time we were a Therapy Team instead of a musical team, with the new goal of bringing John back to his former life-skills. Over a longer time he was able to conceptualize that there was some success from the therapy and he began to participate in earnest.

Individual education, personalities, determination, and previous skills become a part of the tool set therapists use to evoke healing, too. The variables for potential outcomes are endless.

I’m extremely grateful we had both been teachers for many years. We knew the value of building skills using a variety of tools. As musicians, we both subscribed to a method of “practice, practice, practice”. These were and are the methods we used then and the methods we still use: tools and practice.

One note of caution here regarding definitions of aphasia and stroke victims: all strokes are different. Damage can occur in one area, or it can be spread around like small meatballs on a plate of spaghetti. It just depends upon the injury itself, and the type of injury. A lot of the initial aphasia is due to the brain swelling immediately after the injury. The brain swells, like any other part of the body when there is injury. Thus the healing of the brain occurs over time as the swelling goes down. As this swelling gradually disappears, many electrical pathways are reconnected.

I was told that most of the brain swelling would be gone at the one month period. The next benchmark is at three months, then six, and then nine months. After approximately two years after the CVA, the swelling is considered gone. Because of this healing process, these same benchmarks exist for the benefits from therapy. This is an incredibly complex process. I am not a neurologist[2] and I ask that you educate yourself on this field of medicine if you desire more information.

Because I knew of the swelling/healing benchmarks, I understood that the greatest benefits from therapy occurred within the benchmark windows. The clock ticks.

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[1] Aphasia definition: https://www.aphasia.org/content/aphasia-definitions

[2] Neurology definition: http://en.wikipedia.org/wiki/Neurologist

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 2014 Nancy Weckwerth

Therapy Team 1

I love learning. The process of learning what therapy was for stroke survivors was fascinating for me.  As a teacher and would-be perennial student, learning about the benefits and machinations of occupational, physical, and speech therapy was exciting. I knew it was critical for me to observe John’s process and progress from the standpoint of being an advocate for his care. However, once I was able to be at his appointments as much as possible, I got hooked on the process itself. It was as if I was back in college, taking a new class, cracking open a fresh smelling new textbook and diving into a new opportunity to learn something completely different.

Looking back at my reaction to learning about therapy, I realize how grateful I am now that I found Therapy 101 so exciting. My excitement put me on a gratitude ship that allowed me to sail right through the tragedy of why John and I were really in all of these therapy classes. I was able to focus on the goals of his improvement without looking back at the past at all. I locked my panic about John’s condition in a footlocker and tucked it away in a musty closet in the hold of the ship. As long as I didn’t dwell on the panic and fear inside me, I could enjoy my new titles: Chief Advocate and Captain Support.

I felt empowered.  I could throw him the lifeline that would help him improve. As long as he grabbed the other end of that lifeline, together, John and I could do this! Our team attitude that was well developed from our music performing careers together kicked in.  We could get him back to his former self. If we practiced daily and kept on the same page of the score, he would be walking and talking in no time. All he had to do was pick up the other end of the lifeline I threw to him.

At least this was my plan, this was the theory. I learned many lessons along the way about that plan. 

 2014 Nancy Weckwerth

Teammates to the Fore 3

The third and largest project that John and I wrote completely as a team was a full length ballet entitled “Leharjinn”. This was written sometime between 1983-1986 while we were living in Toronto, Ontario.

Somehow we learned of a ballet composition competition that was occurring in Geneva, Switzerland. The prize, with details now long forgotten, was a performance by some ballet company and orchestra in Europe, and a financial prize. John and I decided to dig in and submit an entry to the competition. One of the requirements was that it would be for full orchestra.

The first step was to create a story for the ballet. I dashed that off in a couple of days. Then we planned out the many individual movements that would be performed by the dancers in order to tell the story. In this situation, we felt we were each more suited to specific movements so we chose who would write each movement. The orchestration was communal however.

To describe the basic compositional process, we initially wrote the ideas for piano. At this point the work is basically a sketch for piano with the melodies, countermelodies, and harmonies outlined.  The second step is to decide which instruments are to play which notes of that piano rendition. That process is called “orchestration”. An Orchestrator makes those decisions. The Orchestrator can be likened to a painter that adds the color to a black and white sketch. The Orchestrator takes a large piece of paper that has enough staves on it for each instrument that will be performing. This is called a “score”. Then the notes are carefully placed on the individual staffs. One staff for the first violins, one staff for the second violins, then violas, cellos, and bass. This continues for each and every instrument that will have something to play. When it is completed, the score is used by the Conductor to conduct the composition.

John and I put score paper on the dining room table. For several months we ate somewhere else as that table was the creative venue for our magnum opus. Whomever strolled through that room worked on the orchestration of the entire ballet.

Months later, and a trip from Toronto, Ontario to Buffalo, New York to have it photocopied, we mailed off our entry to Switzerland.

We eventually heard that our piece was one of the top three selected for the prize: but no prize was awarded. This was both a boost to our ego and a slap in our face.

Years later we learned one of the lessons of composition competitions. Apparently it is no secret that a specific type of work is being commissioned. A competition is announced. If none of the works meets the criteria that is unofficially but realistically desired, then no award is given. The contest promoters keep their prize money and try again next year.

At one point in my career of creating performances of works on synthesizer, I actually recorded the entire ballet. Its only performance exists on a now deteriorating set of two cassette tapes. The full orchestral score is lovingly protected, carefully boxed, on a shelf in our garage. It is a skeleton living there: a relic of our past lives as professional musicians and composers together.

All lessons learned aside, John and I enjoyed every moment of writing that beautiful piece. It was yet another series of teamwork projects that solidified our capacity to work together. The real value of “Leharjinn” is that I now know that this was an important piece the Universe gave to us to prepare us for our greatest teamwork project of all, that of surviving a stroke and thriving together in love and joy.

 2014 Nancy Weckwerth

Teammates to the Fore 2

Teamwork project number two occurred during our three years of travelling with the Mantovani Orchestra throughout the United States from 1983-1985. A singer had arrived to perform with the orchestra and the music he brought with him for the orchestra was actually for a big band. It was the wrong instrumentation for the Mantovani Orchestra [1] which is mostly strings with a few brass, woodwinds, and one percussionist. Overnight and working in a hotel room, John rewrote the entire piece for the correct instruments while I copied the musical parts for the players. The next morning at the rehearsal, the orchestra members played straight through the work: there was not one error.

By nightfall, it was performed on stage.

John and I were continuing to develop the ability to work together accurately, quickly, and with a highly advanced set of musical skills. We did this without even thinking about how lucky we were to be able to enjoy our abilities together. What was necessary, we accomplished. 

How well these skills would serve us, in the completely different world of physical, occupational, and speech therapy in the future. Life hands us amazing opportunities to learn and grow. Awareness of our lessons often comes years later. We now live in gratitude for the lessons we learned.

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[1] http://www.themantovaniorchestra.com/

 2014 Nancy Weckwerth

Confessions of a Caregiver: Teammates to the Fore 1

John and I were an amazing team prior to the stroke. As professional musicians we performed together, wrote music together and commuted to gigs together as needed. This professional teamwork added a level of splendiferous joy to our marriage.  Not only were we professional teammates, we considered ourselves soul mates on the personal level. All the stars had lined up for us when we found each other and fell in love.

In our burgeoning business as composers, John and I often collaborated on works that we needed for upcoming recording sessions or other performances. We would put the score on the piano and leave it open. Whomever walked by added the next needed parts of the arrangement as time permitted.

I recall three specific projects where this technique was used. The first was while we were living in the Miami, Florida area. We had been hired to do the arrangements for that ancient technology: the vinyl record album. It was being recorded by a spiritual singer. I believe this would have been in 1982, definitely the pre-compact disc era. The young lady had hired another arranger to do the eleven songs on the album but for some reason which I can no longer recall, he had had to back out of the assignment. We got a panic call and had one week to do the arrangements for strings, brass, a couple of woodwinds, piano, and percussion. This was the first time we ever collaborated on the same works. We had no choice: this was a lot of music to arrange and prepare for the recording session in seven days.

We threw ourselves into the task and there was staff paper, pencils, and erasers spread all over the piano. Our living room looked like the aftermath of a ticker tape parade with larger pieces of paper as these items spilled onto the surrounding floor and copying tables. Whomever was home at the time commandeered the piano and pencils. Whomever walked by later, assessed the progress and continued.

In one week, we both performed on the recording session. Two copies of the vinyl album entitled “Songs of Joy and Praise” sung by Mary Anne Kigar stand proudly, but nearly forgotten on the bookshelves in our home with other vinyl skeletons.

 2014 Nancy Weckwerth