Beating Locked-in Syndrome
At the age of 39, super-fit mother-of-three, Kate Allatt suffered a catastrophic brain stem stroke that left totally paralysed, except for her eyelids.
Although her mind remained conscious and aware, Kate was trapped inside her body, unable to move, speak or swallow and dependent on a life support machine to keep her alive. The condition is called locked-in syndrome and the vast majority of patients never recover. Kate describes the feeling of terror at being unable to communicate or control any part of her body except her eyes. “It is the closest thing to being buried alive you can possibly imagine,” she says.
For three long weeks, the people around her assumed Kate was brain-dead. “I tried to make eye contact, to let people know that I was still here, that I could understand everything they were saying, but no-one seemed to realise that I could understand and have thoughts, or that I was trying to communicate with them, it was so frustrating. I had a damaged brain but was not brain-dead – the two things are quite different.”
It was her close friend Alison who finally realised that Kate was not brain-dead. Alison observed Kate’s expression carefully and noticed how her eyes sparkled as she remembered the fun they had had on snowy slopes the previous winter, how she cried when people spoke about her children or rolled her eyes in sympathy when Alison spoke about problems at work.
Kate says: “I couldn’t believe it when, three weeks after my stroke, my friend Jaq looked into my eyes and asked if I could understand what she was saying – two blinks for yes, one for no.” Flooded with relief, she recalls blinking slowly and deliberately – YES.
Paralysis with feeling
“How does it feel to be locked-in? It is horrendous,” says Kate. “It’s like living your worst nightmare. You’ve only got your thoughts for company and nothing to punctuate your day, which feels endless. There is the indignity of being unable to do anything for yourself. You can feel pain, you can feel touch but you cannot communicate or express yourself. It is like paralysis with feeling..
“Since I came out of the coma I had been in almost constant pain but couldn’t let anyone know. Finally, when they realised I could control my blinking, I had a way to communicate – to let people know that I had cramp in my arms, legs and neck, or that I was hot and uncomfortable from the splints on my feet and arms, or that I was tortured from lack of sleep.”
Her carers and friends began using an alphabet chart as a basic form of communication. From deep inside her paralysed body, Kate could now express what she was thinking and feeling. It was slow and frustrating, on both sides, but it gave her a way of connecting with the world again.
Over the coming weeks, Kate was fitted with a feeding PEG fitted so she could be fed directly into the stomach rather than through her nose, and given a tracheotomy (trachi) to help her breathe. She was moved out of Intensive Care and onto a rehabilitation ward, where her speech and mobility would be assessed and she could start receiving intensive therapy to try and help her relearn lost functions.
A disastrous review
While all of these developments represented positive steps forward for Kate, it was the first review of her care that was to prove to be the real turning point. “The room was full,” recalls Kate. “My family were there and my friends, as well as the consultant and all of the people looking after me. One-by-one, all of my carers stood up and said that there had been no change in my condition. The consultant’s opening gambit was “Thank you all for coming but I have nothing more to add”. I couldn’t believe it, they were all writing me off. The talk then moved to discussing long-term care in a nursing home for me.”
Shocked and horrified, screaming inside her head with frustration, Kate was taken back to the ward with tears streaming down her face. Her friend Alison, picked up the alphabet chart. “I spelled out STAND BY ME,” recalls Kate. “I was furious about the fact that no-one recognised the progress I had been making. An Irish doctor had told me, when I was in ICU, that the brain has plasticity – that it has the ability to rebuild the pathways that have been destroyed by a stroke and start to regain some control over movement and speech. My mum reminded me of this after the review and said it just needed the merest flicker of movement to begin rebuilding these pathways. It was enough to give me hope.”
Motivated by anger
Motivation comes in many forms, and from that moment on, Kate was determined to prove everybody wrong. The determination that, before the stroke, had driven her to take up all-weather fell-running and to complete the Three Peaks Challenge was now focused in a new direction. “I thought, I’ll show you lot,” says Kate. “They expected me to remain like this – unable to move, unable to talk – but I wasn’t prepared to accept that. My planned 40th birthday trip to climb Kilimanjaro was now a distant memory, instead my family went away on holiday to Cornwall and left me behind… it all helped to fuel my anger and sharpen my resolve to break out of locked in syndrome.”
While, unbeknown to Kate, her friends were starting to fundraise to buy her a wheelchair-friendly home and round-the-clock care, she was possessed of a new drive to regain movement and speech and take back the control she had lost.
It began with the smallest amount of movement in her right thumb and big toe. However, her left hand side had remained stubbornly immobile. Kate spent the night after the disastrous review staring at her left thumb, willing it to move. “I could feel tension throughout my body and, after many hours of concentrated effort, I saw the merest flicker of movement in my left thumb. I did it again, it was responding to my control!”
Tiny movements, huge hope
That was it. Kate had proved to herself, and to her carers, that her brain was capable of forming new connections and new pathways. While the movements she was making were tiny, the hope this gave her was huge. “The prognosis from nearly all the medical staff had been bleak, but now I had hope and I wasn’t going to let anyone extinguish it.”
A programme of rehabilitation began but Kate was always several steps ahead of her therapists, setting herself new goals and inwardly celebrating every small achievement. Within weeks, she had had the trachi removed, enabling her to begin breathing on her own and to start swallowing trials, motivated by the prospect of a cup of Earl Grey tea if she succeeded.
Determined to go further
Using a specially designed tilt table to build up her strength, Kate finally recovered enough control to be able to sit on the edge of her bed unaided. But, despite the assertions from her therapists that she had achieved more than they could possibly have believed possible, Kate was determined to go further. “I used the alphabet chart to spell out I WILL WALK AGAIN. No matter what state I’d been in when I came onto that ward, I was determined I was going to walk out of it….and I did. You can see the video on the Kate Allatt channel on YouTube.”
Within the space of 12 months, Kate Allatt defied medical history and set a new precedent for locked-in sufferers. Using her astonishing focus and determination, she not only gained sufficient motor control to walk off the ward, but also regained her speech. “In June 2010, four months after the stroke, my son Woody, who was then six, wanted to hear me say his name,” recalls Kate. “Using all the focus I could muster, I tried my hardest to say it. After a few odd grunting noises, I made the sound ‘oody, my husband and children were ecstatic. I practiced forming sounds all weekend and, when my favourite nurse walked onto the ward on Monday morning, I floored him by saying “Morning Oliver.”
Her astonishing story began to filter out to the outside world even before she had regained the ability to walk or talk. Once she had mastered sufficient control of right hand and arm to be able to use mouse, Kate began using Facebook to tell her story. She says: “It saved me life, being able to express what I was thinking and feeling and receiving messages of support and encouragement from all around the world. Using Facebook gave me a reason to strive for improvement every day so I had something to share with the world. It made me compete against myself.”
Rebuilding a shattered life
After Kate walked off the rehabilitation ward and into the history books, she began an entirely new battle – rebuilding her shattered life. She was determined to run again and, on 6 February 2011, nearly a year to the day after her stroke, she took part in a charity run, watched by crowds of well-wishers and captured by local TV. Since then, she has formed her own charity, Fighting Strokes, which campaigns to raise awareness of strokes and to support stroke-sufferers and people with locked in syndrome. Kate now presents to audiences of medical and non-medical people and, in 2011, won the Extraordinary Woman of the Year Award.
Despite her miraculous recovery, Kate is realistic about the prospects for many people who have brain stem strokes: “There is no such thing as ‘a full recovery’, I will never be like I was before the stroke, but there is always hope. Some people will make more progress than others, but everyone can make improvements, providing they have the right attitude, support and access to help. I counsel people who’ve had a stroke, and their families, that they can continue to make progress even years after the stroke if they continue trying to rebuild the neural pathways and striving for improvement.”
Never, ever give up
Coming to terms with who she is now and seeing her family and friends struggling to readjust to the new her is an ongoing challenge but, with characteristic fighting spirit, Kate is undaunted: “I had everything stripped away from me when I had my stroke. It is a cathartic experience. The emotional impact of a stroke can be very dark and I have bad days even now. But, I have learned to be less hard on myself and to realise that the bad days will pass. You realise you don’t have to play games and you don’t have to live up to anything.
“I am a very different person now than I was before my stroke. I no longer feel I have something to prove, I just want to use my experience to try and help other people, to make things better for them, to share the lessons I learned. I went through hell and that that gives me credibility. I’ve walked my talk. I still do. My message is this: never underestimate the incredible positive power of your mind, whatever you’re facing. Use me as an example if you want to and never, ever give up.”
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