Category: Patient Care

Doctor’s Words

A doctor once said to me, “You will run again.”  This was 10 days after
my stroke. During the next many months of healing, I never forgot those
words. I did run again.

Doctor’s words are powerful.

When an ICU doctor told my family my brain was very damaged and I might not recover, they took his words very seriously. My sister went into this doctor’s meeting thinking, “This is where we find out everything.” His words were incorrect.

I am not saying doctors cannot be mistaken. But when it comes to the stroke survivor’s brain, it seems that so many doctors say the wrong thing. The brain can do amazing things. Doctors should learn about stroke rehabilitation in the 21st century.  Doctors should learn about neuroplasticity.

Wiki says:

Neuroplasticity, also known as neural plasticity, or brain plasticity, is the ability of neural networks in the brain to change through growth and reorganization. It is when the brain is rewired to function in some way that differs from how it previously functioned. These changes range from individual neuron pathways making new connections, to systematic adjustments like cortical remapping.

https://en.wikipedia.org/wiki/Neuroplasticity

In the book Stronger After Stroke, author Peter G. Levine says:

“- There are approximately 100 billion neurons (nerve cells) in the brain.

  – A typical stroke kills less than 2 billion neurons. “

That leaves us with 98 billion neurons! 98 billion neurons to rewire and make different connections so that we can talk, walk, recover.

I have heard many doctors and health care professionals say that stroke recovery ends after three months or six months or one year. Doctor’s words. This is entirely untrue.

Seven months after my stroke, I was lucky enough to find a stroke group on Facebook. I wish I had found it sooner! People from all over the world talk about their struggles, their victories; about all things related to stroke and recovery.

One member said that after six years, he woke up and he could feel his previously paralyzed hand. So many members were told they would never walk again. If a stroke survivor is told they will never walk again, what is going to make them try to walk again? Doctor’s words.

Many patients who are told these things, after three months, 6 months or a year, lose hope. The survivors think, this is it for me, I cannot get any better after these milestones.

A year after my stroke, I made contact with my speech therapist again. I had started work in August, and I felt that I had made little progress with my speech since I started to work again. I remember going shopping with my daughter for her school clothes in September. I was talking to sales ladies and I sounded drunk. I h a t e d that. I wanted to wear a big sign saying, my speech problems are stroke related! I had a zoom call with a new speech therapist. This was the second time I cried because of my stroke. I thought this was the end of my speech progress. How could I work and stay professional if people thought I was drunk or if they slightly cringed when I talked? My speech therapist’s thoughts were that maybe I was not progressing as much because work made me more tired or maybe I had plateaued for now. She never said I would not improve. Doctor’s words.

A person in my hometown had a stroke almost a year after mine. She was in hospital for two months until there was room for her in rehab. Her whole right side was still paralyzed. I reached out to her. She told me her doctor in the rehabilitation hospital told her that she would be in a wheelchair for the rest of her life and that she should start looking at long-term care facilities!

I immediately posted this on my Facebook stoke group. Within fifteen minutes I had at least thirty responses.

She is walking with a cane now and recently tossed her brace. She is NOT in a long-term care facility! Can you imagine if she had listened to those doctor’s words?

Most neuroplasticity rewiring comes from repetition. Levine in Stronger After Stroke says, ”Some research suggests that the magic number of repetitions needed is 2000. But that number is for just one movement. That is, in order to change the brain enough to make just one movement better, you would need 2000 repetitions.”

When I came home from the hospital, I could walk. My leg had unfrozen. My arm had no movement. I started doing an hour of arm and hand exercises every day. For some exercises I had to move my bad arm with my good arm. I thought my arm would recover quickly. My leg had, so why not my arm? Every few days I would close my eyes and have my husband hold one of my fingers. I would try to guess which finger he was holding. My stroke was November 1st and I thought I would be able to do this by Christmas. It has been a year and seven months since my stroke. I still cannot guess which finger he is holding. But I won’t stop trying. My hand may never recover properly; but maybe it will.

Recovery is hard. It is long. More rehabilitation will happen if you really want it. You have to work at it. You have to have intention.

There needs to be more doctors like Dr. Meaghan Keating, who told me I would run again. Doctors with more positivity towards stroke survivors and the wonders of the brain.

For those fellow stroke survivors or family members, here are some good resources:
http://www.marchofdimes.ca http://www.afterstroke.ca
https://en.wikipedia.org/wiki/Neuroplasticity
https://recoverfromstroke.blogspot.com/
There are lots of Stroke Survivor Groups on Facebook; joining one made a world of difference to me.

A Patient With No Voice

On November 1st, 2021, I had a stroke. I was 50 years old and healthy. I ran regularly, did Pilates, took zero pills. My stroke was due to a carotid artery dissection.

My husband found me an hour later. The stroke stole my speech and the right side of my body was paralyzed. The ambulance took me to Inverness hospital to be given the clot buster medication. 

The paramedics talked to me; the nurses talked to me, the CT Scan Technologists talked to me. My family showed up. They talked to me. 

The nurse who gave me the clot buster medication told me, “This is a dangerous medication. People have died in this very room after taking it. Do you consent to it?” I could not talk, but I nodded. I knew this medication could save me. 

 Isn’t this what healthcare is supposed to do? Talk to patients? Tell them what is going on? What is about to happen? Try to communicate with a patient?

The clot buster medication did not completely work, so the medevac came. During my time in the helicopter, I thought of my family and tried not to think of my right side, which wasn’t working. I could not believe this was happening to me. When the helicopter landed after such a short time, I thought I was in Sydney. Nobody told me I was in Halifax. I was awake, in a wheelchair, but I could not make a sound. 

They brought me to what I now know was the emergency department. They placed me in a room by myself which connected to a room full of nurses, divided by windows.

It was now close to suppertime. I had not gone to the bathroom for many hours… pre-stroke. I really had to urinate. Two people came into my room. I could not speak. With my good hand, I pointed at my stomach area more than once. How else was I going to communicate this? They both saw me, but neither person said a word to me. One person said to the other, “We are not going to be able to do what they wanted. We will have to take her now.” I am sure they thought I was losing it; I was just trying to communicate.

They pushed my wheelchair down a hall. I kept looking for bathroom signs so I could show them what I wanted. They pushed me into a room full of doctors and nurses. My heart sank. Please let me use the bathroom before they do anything else to me! I pointed to my stomach again… over and over. I was the center of attention, but again… nobody said a word. 

The QE11 is the biggest hospital in Nova Scotia, but yet nobody talked to me. I was a patient with no voice.

Suddenly, someone behind me put something over my face. I woke up later in the ICU.

Interestingly, I received a letter from the QE11, asking me for a rating of my anesthesiologist. I did not respond. The care he or she gave me was perfect. I was not sick; the meds given were the right amounts; but couldn’t SOMEONE have told me I was about to have an operation? 

When I woke up in the ICU (they had to wake me up every hour to make sure my brain was not swelling) I recognized my family members and realized I was in recovery of some sort. I did not realize I had to make signs to my family that I was mentally astute; I was heavily drugged, so that would have been almost impossible. 

The head doctor of the ICU brought my family to a room less than 24 hours after my operation. He told them a significant part of my brain was dead. My sister asked: once rehab is possible, what were my chances at quality of life? My house was in the middle of renovations; should we make it wheelchair accessible? The doctor told them I may never go home, rehab might not be possible. I understand doctors have to tell it like it is. But less than 24 hours after my surgery to be told that chances are I would not recover? Shouldn’t another doctor be present, like a neurologist, to explain that until 48 hours after surgery, it is hard to know how I fared out if this doctor could not communicate this effectively? My sister left this meeting devastated; she told my family this terrible news.

When I was more awake, my family members and a nurse were next to me talking about who my family doctor was; they had the wrong doctor. Raising my hand, I shook my head. I made them go through each doctor until they reached the correct one and gave them a thumbs up. I had no idea this simple communication meant so much.

Later, my sister mentioned we were in Halifax. I still could not speak, but she saw the look of shock on my face. “How did I get to Halifax from Sydney?” I thought. A short time later, the nurse said something about the date and I understood it was late November. I thought I had been asleep for weeks. Somehow, I asked for a pen and paper. I wanted to know the date. The nurse told me I might not be able to write. She was right. My brain would not compute any part of writing a word. This was one of the strangest feelings I ever had.

I was at the largest hospital in Nova Scotia, but yet nobody knew how to communicate with a stroke patient. Here are some solutions to these communication problems.

1) IF SOMEONE CANNOT TALK, DO NOT TREAT THEM AS IF THEY ARE UNCONSCIOUS.

 2) When I landed in the helicopter, why didn’t somebody tell me I was at the QE11 in Halifax? 

3) When I was trying to communicate, why didn’t somebody try to understand what I was saying or at LEAST tell me I was going to be operated on by some very capable doctors? 

4) Dayshift nurses in the ICU should ensure non-verbal patients are shown the location and date on the whiteboards every morning. 

5) I found a poster for Visual Communication on Etsy for $25. Shouldn’t they automatically provide something like this to all patients who cannot speak? 

Ten days later, I was walking with a cane. Four days after that, I walked out of the hospital. I can write now! My right arm and speech are still in recovery.

I sent my experience through the patient feedback email and received a letter from the Health Services Director Central Zone. She promised their team would work on improving their approach to communicating with stroke victims. She also promised to have me review this material in the coming weeks. This was a year ago.

Hopefully, their care delivery towards stroke victims has improved, to prevent some of the confusion I felt as a patient with no voice.

Published in The Inverness Oran, May 31,2023

For those fellow stroke survivors or family members, here are are a couple of good resources:

http://www.marchofdimes.ca 
http://www.afterstroke.ca
There are lots of Stroke Survivor Groups on Facebook; joining one made a world of difference to me.