Therapy Team 7

My second role in the therapy basket was that of Saint Scheduler and Sister Chauffeur. An average week for the first two and a half years after the stroke included fifteen to seventeen therapy appointments. We were meeting with one or more speech therapists three time a week each, one or more physical therapists three times each a week, and of course, our extra-special Occupational Therapist, Martha, as often as we could. Our schedule book was packed tight. Some of the therapists came to our home, and we went to the gyms or other locations of others.

For P.T., I would get John up, bathe him, get him dressed and into the car by 6:30 a.m. three days a week and take him to a hospital in Glendale, a mere thirty miles away to spend an hour with an NDT Physical Therapist. This Angel was amazing! I truly cannot remember her name so I’ll call her Angel Gabriela. What a gift she had as a therapist. She was calm, kind, loving, and a master at her job. What a gift she gave to John and I. Angel Gabriela worked on teaching John the proper gait for walking.

John had to relearn the proper gait. The so-called therapist at the SNF where he had resided for four weeks after his initial rehab in the hospital had taught him an old-school method of dragging his weak leg sideways instead of a normal walking gait. This allowed him to get around with a cane but it was certainly not like walking as most of us know it. It was not only visibly uncomfortable to watch him try and move like this, but it was also unsafe. It kept him off-balance and frightened as he walked. It works only on absolutely flat surfaces. We all know now that the world is round, not flat, so this method is not acceptable. Our goal was to get him to walk in a normal, or as close to normal a fashion as possible.

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For a while, John saw a Chinese Acupuncturist who was a specialist in stroke treatment several times a week. We were told that in China, they treat strokes with acupuncture immediately after the CVA. The goal is to reconnect neurological pathways in the brain before they disappear permanently. John didn't start seeing this gentle soul until over two years past his event - well past the optimum window for best treatment results. 

Amazingly enough, whenever we would leave the treatment, John would get in the car and speak absolutely normally for about twenty to thirty minutes. It was as if the neurons in his brain were stimulated by the treatment and could communicate amongst themselves. For that short thirty minute window, John and I could converse, laugh, and enjoy each other like we did prior to his stroke. What joy! 

Then, sadly, the small miracle would fade away and he would start struggling to find his words. His aphasia crept back into his brain and took its strangle-hold again. As soon as his normal speech faded away again, I was heartbroken. It was as if I lost him again and again after each trip to visit this doctor. 

I saw and heard the benefits of this treatment - they just didn't last. Was this because of the fact that his best healing window was years in the past? I believe so. I only wish that we had known about this miraculous option for him sooner.  My purpose in relating this is my hope that if you know someone who has experienced severe speech loss from stroke, find one of these Chinese Stroke Specialists. Find one immediately! We were fortunate to live in the Los Angeles, California, area with access to a wide network of alternative medical personnel. Pursue this treatment. You have nothing to lose and the potential for gain is astounding.

This intensive therapy program was supplemented by John and I doing his homework from the speech therapists, and doing other physical exercises we found in books or as assigned by the therapists. 

One of our favorite things to do was go for a bike ride/jog a couple of times a week. I purchased an adult tricycle for John. It had a large vinyl seat that was similar to molded lawn chairs. It was safe for him to be in it. Then I would strap his right leg onto the pedal and use an elastic bandage to attach his right arm to the handlebars. Off we would go! 

I jogged beside him and we enjoyed the streets of our neighborhood for twenty minutes or so.  It was a way I could get my exercise with him. 

I must tell you that to this day, when I see gray haired couples out walking together, my eyes fill with tears. They have no idea how lucky they are to have each other in health in their later years. That companionship is to be treasured as if it were better than gold. 

2014 Nancy Weckwerth

Therapy Team 6: Silent No More

John and I both face monumental pain on a daily basis relative to communication issues. It is the second biggest loss we have had in our journey. His stroke left him able to speak only two words.

[*See below for a description of the image to the left.]

Everyone knows how annoying it is to have a word on the "tip of your tongue" and not be able to recall the word for what you know you want to say. Imagine this: that is how all of John's speech was and still is, all day every day. Day after day after day. All day, every day, for twenty three years.

Although through the years he has improved, aphasia still occurs to some degree in his conversations. Maybe once every four to six weeks now, John will want to say something to me and he simply cannot find the words for what he wants to say. He is what is called Expressive Aphasic. He truly knows what he wants to say, he has just lost the word or words he needs. He has lost language.

When this happens, my job is to start guessing what he is trying to say. This guessing is a double edged sword. Once I guess wrong, his brain hangs on to the word I used and he starts repeating it. The speech pathologists call this perseveration. Thus he will repeat the wrong word and get frustrated because he is now saying the wrong thing. He knows he is saying the wrong word, he just can not stop the process. His brain has snatched a word it recognizes and keeps spitting it back out, inappropriately.

This process is as temper-trying for me as it is for him. All day, every day, I spend time guessing what he is trying to say. The patience required of me is vast. Sometimes I want to scream. This infernal guessing.

And no, he cannot write the word he is trying to say. He lost language. He can neither write it nor say it when it is lost.

One tool we often use to find a word for him is a pencil and paper. John can sometimes draw a picture of the word that he is trying to say. For example, one day I could not figure out what he wanted for breakfast. Finally on paper he drew a circle about four inches in diameter and a smaller circle in the middle. I recognized a bagel. He can be really creative with his drawings of concepts he is trying to get across to me.

I did not and cannot choose the fact that his communication is not at all like a normal person’s. My choice here is to let go of the angst of trying to figure out his intent. Sometimes when we have come to a dead end, to preserve my sanity, I have to just walk away and move on to something else. It is like trying to hold on to a just baked potato that is too hot. The pain of holding on is more intense than the lack of the potato for the moment. The best choice is to let it cool down a bit and then go back later to prepare it.

John did not choose this condition, either. He truly amazes me with his resilience and ability to let go and move on. It is rare when he gets frustrated. Most of the time he will just say, “forget it, later”. That is his way of saying, “forget it for now, we will try again later.” He has many of these shortened phrases that we both know the meaning of. He makes the choice to let it go, move on, and if he can figure it out later, so be it. If he can not figure it out, he forgets it completely and cheerfully.

The best device we both use for remaining sane in this non-verbal abyss is knowing that we can just let it go when we can not solve the puzzle. Fortunately, we know each other so well, and are such good friends, that most of the time we can discover the word he has lost. Here is where our “team” mentality comes into play again.

Over the years his speech has improved impressively. Every once in a while he speaks a word  that I have not heard since his stroke. His sentence structure is flawed, but you can hold a conversation with him. I listen to his speech with pride in my soul every day for every word he utters. He earned them.

He is a miracle: silent no more.

*Description of the image above: This is not an image of John's brain. It is a sample of what his may look like. It is actually an MRI of a patient with chronic non-fluent aphasia. The arrows point to the damaged area of the left brain that is typically associated with John's type of permanent speech issues.

If you wish to read the entire medical article where this image is from, click HERE.

 2014 Nancy Weckwerth

Therapy Team 5: Games for Free

My function with John's therapy was three-fold. Most importantly, I became his coach when we were away from the professional therapists, whom I call Angels. At home, in the car, anywhere we were with a moment of free time: we worked incessantly. As time went on, we got more and more creative with our methods of home-therapy-for-free.

The free aspect of this therapy is only in that we did not have to spend dollars out of our pocket to pay other professionals for this help. In fact, I attribute the remarkable results of John's speaking success to our constant games and homework that we did outside of the mere three hours a week with a speech pathologist. Our willingness to be a team and work constantly made the difference. 

We developed an entire series of games we played, that cost nothing, that provided constant speech therapy. One of those games was for me to trace a word with my finger on the dash of our pickup truck as we were on the road to somewhere. It was John’s job to read the invisible word I had traced and say that word. 

This task was quite challenging for him. Mentally, it involves observing what I wrote [mostly simple three or four letter words], being able to assemble the invisible letters and recall what I wrote, and then being able to speak that word. For a brain damaged person that is a monumental chain of tasks that have to be connected in order to be successful. We were not only developing language, we were developing concentration, assembly, and ultimately the ability to recite what he saw. 

When we first started this game, I would start with words of items that were in the car. For example, I would trace the letters K-E-Y on the dashboard. John would be confused because he could not assemble the letters - it involved re-training his short term memory, too. Much of that had been lost in the stroke. By the time I wrote the second letter, he had forgotten the first one. He would look at me, confused, unable to complete the task. 

I would trace the letters again. If he still did not get the word after the third or fourth try, I would point to the key in the ignition. Then I would trace the letters again. The light would go on in his head and he would say “KEY”. He was so proud of his success. He had connected the visual aspect of the actual key to the invisible letters I traced on the dash. We played this game regularly in the car for years after the stroke. 

In fact, everyone once in a while, twenty three years later, I will suddenly state, “John, what’s this word?” and trace something on the dash of the car. It is no longer a daily ritual, but as a surprise game, we laugh at the silliness of this game. 

This laughter brings us great joy. 

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I cannot emphasize enough, the benefits of laughter between John and I. It not only breaks up our intense moments of frustration when he can not say what he wants to say, but it also heals our pain. We are extraordinarily lucky that our struggle to have conversations rarely breaks down into anger. I attribute that to two things: one, our ability to laugh at ourselves. Second, we have learned to let go of the frustration and simply walk away from that conversation. It is a behavior pattern that serves us.

Often we will try again on the same topic later and we will be successful at discovering what it was that John was trying to say. Those moments bring us great joy for another small success. 

 2014 Nancy Weckwerth

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