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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