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