One Year After a Stroke: What Now?

I don’t remember who was on the other end of the call, but I do remember the words: my father had had another stroke.

My father lay in the emergency room while we waited on the results of an MRI to tell us the extent of the damage and to confirm he did indeed have a stroke. He had already lost control of the left side of his body and could not speak, but the grip in his right hand was strong.

This was a year ago.

A year of riding a rollercoaster that has felt like it was stuttering, coming off the tracks or like it would never stop.

A year of asking what else could be done, what would happen next and why he wasn’t swallowing, talking or moving the left side of his body.

A year of willing the incompetent and careless to give me what I needed to make my father’s life in a skilled nursing facility a little better.

In the process, I have been labeled “the daughter,” code for a word associated with females who are perceived to push too much and demand too much. Silly me for daring to ask that he be clean, groomed and spoken to like a person. That he be encouraged to get better. That he make it to his therapy appointments on time so that he can get better.

A year of willing the incompetent and careless to give me what I needed to make my father’s life in a skilled nursing facility a little better.

In the process, I have been labeled “the daughter,” code for a word associated with females who are perceived to push too much and demand too much.

There have been many conversations with doctors who claimed there was no hope — that he would not make it out of the hospital after such a massive stroke. That he would not wake from a coma after the stroke.

Most emphasized that the one-year point was the standard for recovery. When pressed about whether no one ever recovered after a year or even the possibility of recovery after a year, they would say it was possible to recover after a year, but the odds were not great.

Indeed, last month when my father nodded that yes, he had pain in his left arm and leg, we visited a neurologist in Glendale.

He essentially said, “If it’s been a year, that’s it. There’s not much more that will change.”

I was surprised by his assessment, given that this was the first time he had seen my father, that he knew nothing of the progress, although small, that my father makes each week in therapy, and because our time with him was shorter than the drive to his office. It was a roughly 20-minute drive, in the L.A. rain.

The neurologist noted my father’s inability to move the left side of his body, his inability to speak, and that he was using a wheelchair. I thought to myself, “Well, at least the doctor isn’t blind.”

It was also nearing the end of the work day, and I wondered if the doctor was eager to get us set up with X-rays, and out the door.

In short, the neurologist said, there is no sure way to tell what is causing the pain because my father cannot fully explain what he is experiencing. It is likely the pain he feels is caused by the nerves and muscles that are tightening because they are not moving the way they used to.

To help with the pain, we are going to go the natural route, and stick to acupuncture. It has helped him relax, given hime more energy and made moving and simple tasks like closing his mouth much easier.

So if the neurologist we saw was unable to tell me what else we can look to to help my father become more independent, who can?

And is stroke recovery even possible after six months to a year? The common thinking on this topic is that the most improvement happens during this time. But then what do people affected by a stroke do? What should they expect?

The short answer is recovery is possible. And happens.

A 2008 TED Talk by Jill Taylor, who also wrote “My Stroke of Insight”, revealed that the 37-year-old, Harvard-trained brain scientist was fully aware of how she was losing her ability to complete a simple task because she was having a stroke.

She describes how the process of moving to that thing that allows you to speak with someone else was now a monumental undertaking. Dialing a phone number was accomplished by matching the “symbols” or phone number, on a business card to those on the key pad of the phone.

Her stroke took place on a December morning in 1996.

It took the neuroanatomist eight years to fully recover.

There are clinical trials on stroke recovery using stem cells, and I recently read an article about a program at the University of Cincinnati that focuses on long-term stroke recovery.

The program, called START, seems to be for those who have already received a round of therapy. Indeed, their website states, “candidates for the START program include those who suffered a stroke at least six months ago and are seeking a fuller recovery.”

The article about the program notes that patients often find themselves in a gray area after some therapy, wondering what to do next when they haven’t fully recovered. Sound familiar?

Closer to home, a woman who read my blog post about my father’s stroke contacted me. She is a journalist researching and writing a book about stroke recovery and the insight families have gained in the process. She has interviewed stroke survivors and doctors across the country.

She also happens to have spoken with a neurologist and occupational therapist at USC Keck School of Medicine for her book, including my father’s occupational therapist there.

With her assistance we discovered the stroke clinic at USC. The neurologist there gave an honest assessment of what he thought was still possible for my father after asking about our recovery goals and my father’s medical history.

The biggest relief was that the staff at USC want to help him and will advocate on his behalf. The neurologist recommended my father start physical therapy again. Hearing this was validation of my efforts and acknowledgment that I am not crazy or unrealistically optimistic.

I was nervous about going to the stroke clinic. What if the first neurologist was right? What if there was nothing else we could do? I was worried I had failed, and that we had now reached the end of the line. That the one-year anniversary of his stroke signaled we had the lost the fight.

Two weeks ago, my father’s occupational therapist saw my father’s left hand move. This is his weak side, where there has not been any movement since the stroke. There have been a few times now that we’ve wondered if his movement was intentional but it didn’t seem involuntary. I wondered if something on that side of his body is awakening.

And on Wednesday (April 13), my father was able to move him his left arm. Again, this is the side of his body that was damaged by the stroke. There was no doubt he dictated the movement.

Initially, I didn’t realize he was moving his arm. I thought it was his therapist. But then she asked that he do it again, and he did. I saw his right arm flex and his right leg jut out as he watched his left arm. He was clearly using tremendous effort to will his awakening limb to life.

I congratulated him. This arm has not moved in a year. Since the morning of March 23, 2015. And now, he had managed to send the message to his arm to move and the nerves and muscles responded. I told him that was a great accomplishment and shook his hand. He nodded.

I congratulated him. This arm has not moved in a year. Since the morning of March 23, 2015. And now, he had managed to send the message to his arm to move and the nerves and muscles responded. I told him that was a great accomplishment and shook his hand. He nodded.

His therapists ask him if he is willing to push harder the following week, and he shakes their hand in agreement. He is asked if he understands that there may be some unpleasantness in this process and whether he can push through it. He nods. I see his effort to swallow and talk. He is a willing participant in arm and hand exercises while we wait for a doctor or transportation. He nods when asked if he wants to continue his therapy at USC. And that is all I need to know.

 

20160413_112220
My father, at his weekly occupational therapy appoinment at USC, choosing the “9” card. He was asked to add up the total of the cards on his lap (4+2+3) and choose the correct answer from the cards his therapist was holding. Addition and subtraction were easy, but he is reviewing multiplication.
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Do You Want to Talk?

Even before his stroke the words to apologize and explain often eluded him. And now, sitting in a bed, completely dependant on someone else, without the ability to say a word, my once fiercely independent, loud and commanding father has no control of his world.

My sister was in town for the holidays, which meant she was going to visit our father. She had not seen my father since he was hospitalized after his stroke in March.

She wanted someone to go with her. I told her my brothers, who were staying at my mom’s house for Christmas, would be happy to take her.

But she said she wanted someone with experience. A “veteran,” she said. And that veteran was me.

I knew and she knew it would be an emotional visit with my father.

Ours is a complicated relationship, and as he learns to swallow, talk and move his appendages all over again, his triumphs and difficulties seem to carry even more meaning.

We arrived at the nursing facility, and she walked with me from the back of the facility toward his room. His room is near the front of the facility, and his bed is near a window that faces a main street. It’s not a bad view. The passing cars can serve as a distraction and have a rhythm to their flow. There are sufficient trees to add some color and softness to the mix of concrete and asphalt.

I loudly announced my presence, but he seems to hear or sense when someone walks in the room because he had already turned his head to look in my direction as my words made their way out of my mouth.

He saw that my sister was somewhat behind me as I told him he had another guest.

I turn to look at her and move aside so she can have access to his bedside.

My father began to sob as she approached him.

She asked him how he was doing, and I heard her voice crack before I saw the tears well up in her eyes. She hugged him because my sister is a hugger.

She asked him how he was doing, and I heard her voice crack before I saw the tears well up in her eyes. She hugged him because my sister is a hugger.

There was silence.

I wondered what he would say to her if he could speak. Or if he would say anything at all. We were never good at talking about the obvious. And when you add hurt and a complicated past, it gets…complicated.

My sister wiped her tears away, and I told my father it was OK.

I transitioned into my usual routine of sharing the latest family news, current events, etc.

We practiced writing on his whiteboard, but it looked like he was either trying to write his full name in cursive or he was attempting to write Chinese characters. It’s possible he was too emotional to write and could not concentrate. So we practiced just writing the letter “F”, for Frank.

My sister stepped out of the room for a few minutes.

When she returned, my father and I were still working with the board.

I switched gears and asked if he’d like to see some photos.

He nodded, and we started going through the photos on my phone.

I checked the time and my sister and I told him we had to make a mad dash across town to LAX so she could catch a flight home.

Since their emotional greeting he had not looked at her, and the mix of joy, embarrassment and possibly guilt still hung in the air.

My sister asked me if I noticed, and of course I noticed, but I was not surprised.

Since their emotional greeting he had not looked at her, and the mix of joy, embarassment and possibly guilt still hung in the air… Even before his stroke the words to apologize and explain often eluded him. And now, sitting in a bed, completely dependant on someone else, without the ability to say a word, my once fiercely independent, loud and commanding father has no control of his world.

Even before his stroke the words to apologize and explain often eluded him. And now, sitting in a bed, completely dependant on someone else, without the ability to say a word, my once fiercely independent, loud and commanding father has no control of his world.

He has a Chinese calendar in his room now, and I showed him on the calendar that he had a week off before he begins his work with the USC therapists again.

The occupational therapist worked with him on straightening and extending his fingers, and she soon presented him with an opportunity to practice writing.

He immediately began to write his name when the therapist handed him the marker.

The letters appeared shaky, but it was clear enough to make out his name.

She asked if he could write my name, and then she wrote my name on the dry erase board and asked him if he could trace over it.

He looked at the board, studied the words and then wrote my name.

I was sitting across the table from my father and the therapist, fiddling with my phone, when I heard the therapist’s voice rise in delight. She congratulated him on writing my name so clearly. I looked up. I too was delighted. I walked over and snapped a quick photo and congratulated him.

My father started to shake and his face became red. His emotional reaction to writing my name made me emotional as well.

Especially because the word was written so clearly.

 

Maria
My father was able to write my name during an occupational therapy session earlier this month at USC Keck Medical Center. The word in all caps was written by the therapist; he wrote the second “Maria.” He also sees a speech therapist at the outpatient rehab center there. After a stroke in March, he is learning to swallow, move his arms and legs and communicate. 

He continues to make progress with his ability to swallow, and it is not uncommon for him to be able to swallow after he coughs. It is also a littler easier for him to swallow, and he is now swallowing without the assistance of the VitalStim therapy (electrical stimulation for his throat muscles).

The speech therapist also began having him practice talking – mouthing responses in addition to nodding or shaking his head.

I often wonder if he wants to talk. Perhaps it’s easier for him not to since it allows him to continue avoiding the past. Perhaps he does not want to discuss what is happening to his body and his mind.

We came to an agreement that once he began eating, I would take him out to dumplings. I asked him one day if he missed eating and the taste of different foods. If he missed Chinese food. He laughed. Which I think means yes… I have not mustered the courage to ask if we wants to talk. 

We came to an agreement that once he began eating, I would take him out for dumplings. I asked him one day if he missed eating and the taste of different foods. If he missed Chinese food. He laughed. Which I think means yes.

I have not mustered the courage to ask if he wants to talk.

A few times in therapy we leaned in to hear him utter a very low, hoarse response.

Of greater importance is the opening and moving of the mouth, tongue and all the related muscles, the therapist said. Sounds, of course, are great, but she wants him to engage more.

Back at the skilled nursing facility, I practiced what he had done in speech therapy, encouraging my father to “talk” and mouth his responses.

Before leaving, I mentioned when our next appointment was, and asked if that was OK, or “good” with him, in Chinese.

Hao?” I said.

He nodded and opened his mouth.

Hao,” he responded, in a raspy, Darth Vader-like voice.

“I could hear that!” I said. “That’s good – hun hao (very good).”

He began to shake and cry.

These are small steps, but steps nonetheless, I told him.

Hun hao,” I repeated, with tears in my eyes.

Very good indeed.

The Road to USC (and Speech Therapy) After a Stroke

For almost a week, I called different departments at USC Keck School of Medicine, wanting to speak to someone about how to get speech therapy with vital stimulation for my father.

I kept getting an answering service and had left a few messages, but was not getting a call back. 

My father has been a resident of a nursing facility since his stroke in March, and it is not possible for doctors or therapists from other organizations to come on site and treat him, with the exception of his primary care doctor.

After my father was hospitalized in October for a fever and what turned out to be a less severe form of pneumonia, he had the opportunity to get NMES, or neuro muscular electrical stimulation, also called vital stimulation, on his throat during speech therapy there.

It helped him to swallow, something he still cannot do regularly on his own. He eats through a G-tube and because he cannot swallow well, his saliva went the wrong way and caused him to aspirate. He was coughing and eventually became ill.

To avoid this, and provide him with every opportunity to get better, especially for something as important as swallowing and eating, I began calling USC as their speech therapists are trained in vital stim. The speech therapist at the nursing facility is not.

For some reason, each time I called the number for outpatient therapy at USC given to me by the operator, I would get an answering service.

Then I decided to have USC call me through a feature on the speech therapy page of their website.

The heavens opened, and a live person came on the line.

I explained the situation and the woman said it sounded like her supervisor would need to speak with me, but unfortunately, her supervisor was out of the office. The receptionist took down my information and said she would have her supervisor call me.

In the meantime…

I asked the administrator at the nursing facility about how I could get my father to USC for speech therapy and vital stim, since they did not offer it, and I was told he did not know because they do not normally send their patients off site. They employ therapists at the facility, and usually residents are seen by their on-site therapists.

If an outside therapist is not allowed on site, then how do I get my father to a place where speech therapy with vital stim is offered?

The administrator at the nursing facility said he wanted to help, and I said that was great, because I was trying to reach USC, but had no idea what I needed to get the process started.

I was referred to the nursing facility’s social worker who seemed very confused about what I wanted to do.

“We haven’t done this before,” she said.

“OK, well neither have I,” I said.

She suggested I call USC and ask what they needed, and that I call his insurance for information about whether it would be covered if he was being seen in an outpatient setting.

I was referred to the nursing facility’s social worker who seemed very confused about what I wanted to do. 

“We haven’t done this before,” she said.

“OK, well neither have I,” I said.

“Shouldn’t you call his insurance and USC Keck’s speech therapy to inquire about costs and insurance?” I asked. “After all, he is a resident at your facility. Why do I feel like I am the one doing all the research?”

Probably because I was.

To the credit of the insurance customer service rep, she did explain the process for the paperwork that was needed. She could tell me speech, occupational and physical therapy were covered. But she could not see his Medicare information, and in terms of whether my father could have just one therapy, such as speech, off site, was a question for the nursing facility.

As to what was needed to make off site therapy happen, and the cost, the facility knows, the customer service rep informed me. They should be the ones contacting the provider, she said.

Funny, I was thinking the same thing.

“Shouldn’t you call his insurance and USC Keck’s speech therapy to inquire about costs and insurance?” I asked.

“Why do I feel like I am the one doing all the research?”

Probably because I was.

I put my writing skills to use, and drafted a detailed email to the administrator of the nursing facility. I laid out all my questions, and shared that both USC and the insurance company said the nursing facility (as in he and his staff) needed to answer several questions and provide the paperwork needed to begin the process of outpatient therapy.

At least two weeks had gone by before the staff at the nursing facility offered to sit down and discuss this to see how we could make it happen.

The green light, after so many reds…

I drafted my email to the nursing facility’s administrator after I spoke with the USC rehab supervisor. She was sympathetic and helpful, and is the second wonderful person I have spoken to over the phone at USC Keck. (The first person was extremely kind and helpful when I was looking for nursing facilities shortly after my father’s stroke.)

She asked me many of the questions I ended up asking the administrator. She made it clear that she was there to help, adding she could hear the frustration in my voice and that I should not stop advocating for my father.

It was evident I had come across a series of road blocks, she said, and she would be a green light.

I was so thrilled someone seemed to understand the language I was speaking that I thought I was going to cry.

The staff at the nursing facility seemed miffed I had put them to work. And defensive at the thought that I would seek therapy elsewhere. Some of them, anyway. The speech therapist would later tell me she was glad my father would be getting vital stim and continuing with acupuncture.

Which brings me to some good news: acupuncture helped my father swallow.

The Monday after his acupuncture treatment, in which fine needles were inserted mostly on his head and in his ears, he was a much more willing participant during speech therapy at the nursing facility. The speech therapist informed me that she tallied 14 swallows, and that he ate most of the gooey substance in the small cup.

By the end of the week, when I visited with him, it was difficult for him to manage a handful of swallows.

I’m impressed and overjoyed. I knew acupuncture would help him in some way, but I was not sure how. I had hoped it would help with his ability to swallow, but I did not expect this.

More acupuncture appointments are on the calendar, and I just received confirmation from the nursing facility that his transportation is scheduled.

Now, I just need to make sure all the paperwork is in and that we — because I will be going as well — are ready for evaluations at USC for speech, occupational and physical therapy. Each evaluation will be about an hour, and once I know where on the USC Keck campus each evaluation will take place, we can schedule transportation.

Progress. Finally.

Dad_little My father, when he was much younger. Taken in or near Shanghai, in the early 1940s.

The people in the top photo are my parents, circa 1970.