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Stroke Survivor Overcomes Locked-In Syndrome

Brainstem stroke or Locked-in Syndrome leaves one trapped in one’s own body. Recently Tony Nicklinson was defeated in his fight with this condition, but I have a different story to tell. Left paralysed after such a stroke, I found myself unable to respond to the world even though I understood everything.

I would lay awake in bed with my whole body hurting, but unable to move a finger. I was wired to drips and machines. Nurses would come and go, but nobody seemed to notice that I was in pain. I wanted to cry out, I wanted to speak, utter some kind of sound, but nothing happened. I felt like an outsider watching the world pass by. There are many things that I wanted to do, many things that I wanted to say, but you are trapped – trapped inside your own body. You are locked-in.

Before my stroke I was a busy mom. My hands were full with three kinds, yet I always found time for my passion; running. I would run about 70 miles every week. When I started having consistent headaches over the course of several weeks, I didn’t give it much thought. When I finally went to the doctor, I was told that I was suffering from stress migraines. I went back home with a few painkillers. Six hours later, I was wheeled into the same hospital, semi-conscious, and diagnosed with a brain stem stroke.

Brain stem stroke, in layman’s terms, is a condition when the part of the brain that controls mobility, speech and tongue movement is often totally destroyed. Victims can feel all sensations in the body but find themselves unable to move; all they can do is blink or roll their eyes up and down. In medical terms, it is often associated with locked-in syndrome, a very short, medium or long-term state.

Locked-in syndrome is often erroneously mistaken to be the same as being in a vegetative state. In truth, you look different and you can’t do anything, but you are still the same person inside.

I went through months of physiotherapy. The physiotherapist moved my limbs in the hope that my brain would relearn how to generate movement. It was a long drawn out process and more than once, I felt like giving up. The fear, the loneliness, the indignity, the anxiety of separation from my children, the pain of not moving sufficiently, and mostly, the lack of other’s understanding of my condition. During the first 16 weeks after my stroke, my thoughts were incredibly morbid and I suffered greatly from depression.

But then it changed. At 16 weeks, I was seated in a wheelchair, dribbling, surrounded by family and nurses awaiting a routine review. I was conscious of my own progress, I had been able to move my right thumb a quarter of a millimetre, but the medical team offered a different assessment. They unanimously agreed that they hadn’t seen much improvement and the conversation switched to a long-term nursing home plan.

I was absolutely devastated. My mom and my best friend wheeled me to my room and gave me my communication board. I blinked twice for ‘yes’ and one for ‘no’ to each letter they pointed to. Slowly I spelled, “Stand by me.” In my locked-in world I felt that everybody had written me off. Several days later, exasperated with my self-pity and depression, I decided, “I am going to bloody show you all that you are wrong.” I was prepared to fight it out.

I was soon on my way to a miraculous recovery. First, I moved my left toe. It was a huge moment for me. I thought, if I could move the part of my body furthest from my brain, then it was ‘game on’ for the rest of my body. For the next few months, I willed my body to move and did many exercises as part of therapy.

Five months into my stroke I uttered my first word. My husband and children were visiting, and at the time, I was writing with my right hand instead of using a communication board. My six-year old son said, “Don’t write my name. Say my name!” His voice was so innocent that I mustered all my effort and managed to say “Oody!” I tried to say my other children’s names, but couldn’t speak them clearly. All weekend I practiced on my own in the hospital room.

On Monday morning, my favourite nurse Oliver entered with a box and said, like he did every morning, “Morning Kate.” I said “Orning Oliver,” and he dropped the box and cried. He said, “It’s for moments like these that I joined nursing!” Little did I know that I had been diagnosed with a tracheal condition and the doctors had told my husband that I would never speak again. Four months later, I walked out of that hospital.

Life for me has changed since my stroke. I stuck to my ambitious goals and 18 months after my stroke I participated in a 2km.

Like many survivors, I wanted to use my experience to help other people understand this confusing condition. I founded a charity, Fighting Strokes, began writing books and started a blog. I still deal with the classic signs of stroke, depression and irritability, but I have also discovered the humour in the situation. I encourage others with locked-in syndrome to seek that humour as well.

By: Kate Allatt, Stroke survivor, founder of Fighting Strokes

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"I was conscious of my own progress, I had been able to move my right thumb a quarter of a millimetre, but the medical team offered a different assessment."

Neuroplasticity

Neuroplasticity is the brain's ability to heal and "relearn" functions. Understand that something needs to be done tens of thousands of time in order to rewire these connections. This means you might have to try something 10,000 times before seeing movement.

An Exercise in Rewiring

Listen to some of your favorite music, something with a real nostalgic value, and imagine yourself dancing around the room with a partner. Visualize your legs lifting and stepping and your arms rising and falling. This simple mental exercise will be enough to get your neurons firing and start redeveloping these pathways.

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